Dementia Caregiver Tips & Ideas

As an Intuitive Angel Guided Reader, I connect with the angels and guides to pass on the messages needed. I have been a Dementia caregiver to my husband since 2014. Full time since 2019. I am being guided to share tips and ideas that have helped me cope and helped him as well. I hope these messages will help you.

If you are connected on Facebook, I do post more frequently there under the group

Our Dementia Journey - Peter & Connie

https://www.facebook.com/groups/1236174796809387/

Dec 5, 2022.

Nice new addition to Peter’s room. Found a great thrift store in Courtenay. Got this bookcase for $2!

Yesterday after the market all my stock was placed in the car. It’s been too cold to lug it to the shed. So it’s staying in the car. Found the bookcase. Measured and fingers crossed after I moved around all the stuff… I just got it in the car! Wow! Where there’s a will, I will find a way! LoL 😂 You can see how it’s touching the seat and the roof in the one photo!

Brought it over to Peter’s room. Put the shelves in and then decorated.

Plus I brought in the fake plants and some Christmas stuff I got at IKEA last week and the Thrift store today! Made a little Christmas scene. Just need mini lights for the trees. Next time.

Peter had his bath today. Makes him very sleepy. We did watch Jeopardy after setting everything up. Held hands. He gave me some great kisses. 💗. Then I took him to the lounge to watch tv there. Told him I will feed the cat while he watches the show, then has supper.

I figured best to leave and get home before the temps drop and roads freeze again.

Tomorrow supposed to be freezing rain - will see how things are before I decide if I go or stay home.

Note. Added our names to the group title. I noticed aFew other pages or groups with the exact same name. So to eliminate confusion that this group is us! 😊

Dec 3. It’s been sunny & above freezing and parts of the Roads are now wet. Right now it’s 1 degree and going down to -4. I know it will freeze shortly. Not driving to Courtenay now.

I was a vendor at a market all day. Called the care home Around 4ish. He is doing well. Just finished listening to music in the lounge area. 💗. I am Sending my love and hugs to him.

Everything happens for a reason. He got Covid and I didn’t see him. Then me. So it helped push me to accept that I can stay off the highway a couple days. A few days is nothing like the week without going!

The universe (my angels and guides) knew I wouldn’t voluntarily give up not going there. So they forced the issue with covid! Hmmm 🤔 they know me so well.

Dec 2. 10am. Nurse called. Just after 12:30am, they found Peter on the floor beside the bed. He was changed, due to being saturated a lot. About 3 changes due to wet. But that could be the UTI meds causing that. Third time he was on floor. I am assuming his bed alarm was on?

This morning He is good. No injuries. Talking a mile a minute.

It’s snowing and many weather warnings. So I’m not sure I will be down today. So sad 😞. But I am not confident about driving that far down to Courtenay with temps around zero, stuff melted. Now snow. Could be ice under the snow.

If I get in an accident that means more time away from Peter. So I best be safe…. And smart…. As hard as it is.

I have markets in town this weekend. Meaning might not get to see him till Monday? Weather supposed to be better… maybe I can get down to see him around supper on Saturday? 🤞🏻🤞🏻🤞🏻

Have I mentioned that I don’t like this weather? It makes it so hard to get around safely and it’s keeping me away from Peter 😢

I'm in Abbotsford for a couple days.  Helping family. 

It’s 5:30am CVSV nurse called to tell me Peter’s sugars were low last night. Below 9. But they gave his insulin anyway. Order is if under 9, no insulin !!

His sugars were around 2 this morning. He was disoriented, sluggish. Of course!!! Called 911. M2 is his report. No hospital. But ambulance attendants said take him to hospital be checked.

He was on the way as they called me. Stupid! He was already perked up and talking as he was leaving.

I’m on mainland and can’t even see him there!!!

Just concerned he will be ok.

They feel he will be back soon. But…. 😢😢

Meanwhile, I went out to get the 3-4 inches of snow off the car. Not snowing right now. Ferries running 🤞🏻 Roads should be better by 10:30 as I leave for the ferry!

Then as I had time to breathe! I called the hospital. They said he will be hours. Many more tests. I said No! His DNR said not to the hospital unless it can’t be handled at the home. I want him sent back.

Dr said he will prescribe antibiotics for a UTI they found - I said ok. Sugars are at 9 now. Good! They will coordinate with home and no more tests as per my request and he goes back to CVSV! Good!

I called nurse at home. Told them update. Said Peter should be back. Hopefully soon! Asked to call me when he gets back.

Pray 🙏 it will be very very soon.

We have the DNR section M2 which says ONLY transfer to hospital IF care cannot be handled at the home! The nurse said he was coherent, numbers back up, and they wanted to call me first. The paramedics said no we take to hospital to be checked! Why do we have this form if it’s not followed? Why?

Nov 20. These last two weeks have been the hardest. First 6 days not seeing Peter due to him having Covid. Then I see him one day. Then I test positive Tuesday Nov 15. Today it’s been another 6 days. I called the BC health line. It’s ok for me to go out if I don’t have symptoms. No more mandatory isolation here in BC. BUT the care home has a regulation that people show their negative test results to enter. I understand why.

But I don’t know if I can go on each day… I push myself to get things done. Otherwise I sit and just veg out. Watch mindless shows to keep from thinking of Peter. I call daily and hear he is doing well. Then I cry 😢 and cry. For 38 years my life has revolved around my loving caring wonderful husband. Now I’m being kept away (just because of a stupid positive test) from him and I’m really having a tough time.

Yes, I pretend to all that I’m ok. But inside I’m breaking apart. I try not to think. Thinking makes me cry and then I fall apart. I’ve messaged the care home and asking if there is any way we can get around this positive test. Especially since I have no symptoms! I’ve been told some keep testing positive for weeks! I can’t even fathom that far ahead!

I pray each day for a negative result so this nightmare goes away. 🙏🏻🙏🏻🙏🏻🙏🏻

This photo is from a few weeks ago as he looks through a cool car book.

Money? Does it grow on trees? Please?

It takes time and I still have moments when I say, ‘But I can keep Peter here with me!’ These moments happen when he is more lucid. Talking a bit. Actually being present for a few minutes. That’s when I feel guilty about deciding to put him in a home when one is available. But I realize overall it is best for him!

Now is when the organization Connie steps into the forefront! I find out with the subsidized homes 80% of his pension income (for those out of country this is for Canada) is going to the home. They take the figure from his gross pay. He gets $ deducted each month so we don’t pay income tax. Instead we get that money back! But, with that money taken off and the 80%, I get left with $130 +/- of his pension to help pay the bills we barely pay as it is now!

PLUS I found out this week that over and above that money, I still have to pay for all his medications from the money I have here at home! Plus, I have to pay extra for any hair cuts, trips they take, toothpaste, kleenexes! Etc, etc! Here is a list....

What Other Expenses May There Be?

● Moving in and out costs

● Personal transportation, including to medical and dental appointments

● Ambulance charges

● Personal clothing and labeling

● Dry cleaning costs or laundering of items that need special attention

● Personal preference in care items, such as tissues, shampoo, deodorant, toothbrush,

toothpaste, razors, comb/hairbrush, dentures and supplies,

● Personal TV and cable charges

● Personal telephone connection and monthly charges

● Eye glasses and examinations

● Hearing aids and batteries, including replacement batteries

● Dentist visits, dental hygienist visits

● Foot care services

● Barber and hairdressing services

● Purchase or rental of specialized equipment for your use

● Repair and maintenance of your specialized equipment

● Hip protectors

● Cost of bus trips, outing and meals costs when you are away from the home

● Your newspaper and magazine subscription fees

● You may be charged for both prescription medications and over-the-counter medications,

including vitamins, herbal remedies, and some specialized medications

So, there will possibly be so much extra money going out.... Unbelievable! I know some things may not be needed. Like a phone in his room? He doesn’t remember how to answer a phone! A TV? He never has wanted a tv in the bedroom. There is one in the common areas. But still ….. WoW!

Ok, I spoke to a financial lady at VIHA. She suggested Income splitting. Where part of his income gets put over to me. Then I get more to keep and they have less money to take 80%! I spoke to our tax lady. She informed me about what I already read online. Income splitting does not include CPP or OAS. If he had any other pensions it would be possible. Well he doesn’t! Just the two basic ones. So that option is not possible for us.

Also. With our low income level he also gets the GIS. Guaranteed Income Supplement. It is figured by the combination of both our incomes. If low, like now, he gets this extra money. If I start working more once he is in a home to supplement the money lost to the care home (so I can still pay bills), then our combined income goes up and he might lose the GIS. Meaning less money coming in and possible increase in how much we have to pay for the home. Meaning it comes in one side and goes out the other! Not fair at all for me living, or trying to live a life here.

I was told once he goes into a home, to fill out a form ISP-3040 for ‘living apart for reasons beyond our control’. This would make us do our taxes as individuals (not a couple) and that way he might get more for GIS? Plus any income I make will NOT effect his GIS. Means possibly even a small increase in the GIS! I asked our tax lady. She said to talk to OAS about this to get the info as to if this will be beneficial for our situation. Since all situations are unique.

If doing our taxes as individuals helps in our situation, Then I have my businesses. I will just need to work more and I will have the time to do that. I will be able to attend markets, fairs, have 31 parties, host the spiritual wellness fairs and symposiums, and not worry about scheduling times for my intuitive Angel guided readings. Meaning I can work and increase my income to supplement what goes out to the care home!

Now I am not a whiz about all the financial above stuff. Just going by what I have read and been told. But I am just letting people know that there is more to it than just paying 80% of his pensions! Lots more to look at…

Next order of business. Getting ready. I have ordered iron on (will also sew them on) name tags for all his clothing. These ones will have his name printed already and just need to attach! Might as well get started now so that it will not be a sudden ‘Oh No I need to do all this!’ at the last minute. That’s the organization part of me kicking in. Plus it also helps me to get more use to this new transition before it happens. Also I read, ‘After you receive an offer of a bed from one of your preferred care homes, you have up to 48 hours to accept the offer and occupy the bed.’ 48 hours! So I need to be ready!

I do have a tour set up for this week. Will get more info and see what the place is like.

I know I need to be prepared for myself and Peter’s emotions during this time! I was reading that every person reacts differently. For some it’s welcome and positive, for others it’s stressful, particularly if they have dementia!

I am told it takes time. I can’t imagine how Peter will react. We can’t predict how the mind will work!

They say it is not unusual to feel sad, anxious, angry, or confused. I’d say that’s for both of us. I know I will feel just as lost and guilty!

They suggest handing over to the staff information about the family and a life-history form. Bring in personalized stuff like special items and photos. So I need to get these written and photos ready, with frames.

From all that - I know I need to prepare what things Peter might like to have to make him feel more secure. Right now, I can’t think of anything. Unfortunately with dementia, most things no longer look familiar to him. Even our home when we arrive some days. He has no idea why we are stopping here!

All in all, it’s not just signing the forms and waiting for a home. It’s a lot of behind the scenes getting ready. Especially if I don’t want to suddenly have to do all this within the 48 hours we are given to move!

Oh my Lord! What have we signed up for at this later stage in our life? Why? What are we to learn or teach?

So I am finally coming to terms with the idea that Peter might need to live in a care home. I have decided to no longer worry about it. But to prepare, just in case. It’s taken a toll on me, emotionally to get to this point. It’s hard to ‘let go’. But I realize that one day he will get to a point of not being able to walk. I can’t lift him and move him on my own.

I am learning to look at it as a longer day program. He goes to the adult care for 3 hours four days a week. This would be an overnight care. I have been told by the specialist on Monday that I can be with him as long as I want the first while to help him and I get used to him being in a different ‘home’. I was concerned having read about people being told to drop them off and not visit the first week or two to help them settle! That would NOT work for me or Peter! I know I am assuming for him. But I feel I have earned that right to do that. LoL ?

The geriatric specialist who diagnosed his dementia and saw him again on November 8, 2021 told me that he feels for us it would be best to be together and slowly allow us both to ‘wean’ off the time as the days, weeks go on. I am much more comfortable with that.

So much that I have actually looked at the three homes on the Internet. Now I need to make appointments to go in to view (tour) them and ask questions.

I have reconciled myself to believe that I needed to have that day where he couldn’t move to ‘wake’ me up and get me moving with placing his name on the list for a subsidized room. Then going through the emotions and turmoil and finally knowing that if ‘the universe’ feels he needs to go there, a place will open for him. If he is to stay home and leave us from here, that will happen before a place opens for him.

It’s difficult to be realistic. But I know the end result of this disease is not a long life. So I have had 7 years to come to terms with that knowledge. It will not be easy for me, either way. I only know I will have a community of help to get me through one of both options. As I’ve heard before. What is to be will be!

The specialist’s nurse told me that it will be hardest on me. I have the memories. He will have moments. But, his memory is no longer what it was even a few months ago.

More and more he doesn’t remember people. He looks at photos and knows not who the family are. He looks at me and many times doesn’t know who I am. It’s all part of the sad dementia process....

I use to look at him going to a home as me giving up. But it is really me finding the best possible care for him overall. Somedays the lack of sleep makes me cranky. Not good for either of us. He doesn’t remember the incidents, but I do.

I have been lucky. He is not violent as some become. I am also lucky that I have been able to stay as sane and not totally exhausted and worn out as some. I do feel my meditations help. But, even that gets difficult when faced with gibberish, leaning, not walking, not taking, eating and having all the food land all over, the incontinence, the many loads of laundry, the constantly being ‘on’ and watching to prevent falls or other mishaps... Yes, I must admit some days it is tough. But, I know and believe the quote, ‘God gives us only as much as He knows we can handle’. As much as I wish to believe I am superwoman - I unfortunately am not. There will be a time when I am physically no longer going to be able to look after him. Mainly due to his mobility. Therefore I resigned myself to know I need to have the option of a home open before we come to that point.

Yes, I still feel emotional and want to say I can do it! But I am also (hopefully) smart enough to know that what I want is not always what ends up being the best for all.... Wow! That’s a tough mouthful to admit!

Now that I have rambled on, I will bid everyone a wonderful goodnight. It’s time for bed, to sleep a bit before he gets up... This truly (literally) is a 24/7 life and I still work three jobs (from home) on top of it!

In closing I say, my prayer is that what is to be will be, and we will ALL be strong enough to handle what happens. Much love to all...

I also want to thank you all for your support regarding Peter’s care and possible move to a home. It might be a few months or a year before a room is open. But your suggestions, support, and just caring helps me a lot.

Everything we do is so much a hit and miss. Others can suggest things. But we need to feel right.

I will update you about care homes.

Of the three subsidized, One feels ‘good’. The people I talked to at the home etc. plus they called back and are giving me a tour on Nov 24! I will not mention names here because, we all have our own good or bad info for all of them! I can only go with my own intuition.

So I told the worker to change to this as the only place for Peter.

Plus another one, was almost rude telling me don’t do tours re covid. Plus that no other homes do. This man was abrupt and not very kind in the phone! A big no (for us) to that home!

Another home, I couldn’t even get to speak to anyone. Just leave messages. They still as I write this haven’t called back! So that’s not a good mark in my mind.

Last week after looking on websites and talking to people, I decided the one I picked will be the right fit for us. Then today they called me back and I chatted and got questions answered and a tour booked! Again positive for this home! It’s like the Universe is aligning things for us.

This came from a relative last week -

I’m glad you have made a decision Connie. Probably the most difficult decision of your life so far. We feel the same way about the situation, and for your sake as well as Peter’s it’s obvious that the time has come.

I was telling my friend yesterday about it. She works in elder care nearby. If you have a choice when a room becomes available, the best place is (here she mentioned the one I already decided on)! And the worst one is, (this was the one I couldn’t even get through to talk. Just push all the buttons and end up with more recordings)!

Also my work mate says the same about (the one I picked), where her husband is the kitchen manager.

I hope the list is not too long and the process can be started in a timely manner.

(Here I replied and told her my instincts said the one her friend mentioned!)

Her reply

You do have good instincts, that’s for sure. My friend also mentioned (the one with the rude guy on the phone) come to think of it and she also said no to that.

So again it’s like for us this one is looking like the right fit for Peter and I. Again, all have good and bad experiences from other people. It’s bound to happen. So it’s what is feeling right for us.

Now we wait. The paper says 9-12 months wait… for a room to open. Gives me time to process and get use to the idea. More each day. I still have twinges of ‘I can do it!’

But that’s life.


MitSie giving Peter’s back a massage! LoL . This photo was Friday October 29. Our PJ Day. We just relaxed & watched funny old shows, Lucy, Dick Van Dyke, etc... Over the weekend, he had a couple nights of not standing too well when he got up during the night. But then.... dare I say it too loudly? Monday and today, Nov 2, Peter has been more alert, a few times even talking in sentences! Not a lot, but more than just the one a day I was hearing! A few times he had his sense of humour, he was ‘with it’! Not all the time both days, but so much more than the last number of months! I know the dementia takes away things from his brain. I know the mini strokes take a huge toll on him. But it seems with time and care, the symptoms from the mini stroke get better.... Some changes are permanent, but some seem to get better. For how long? We never know. We only know it’s until the next mini stroke, the next...... I cherish these few moments during the days when glimpses reappear.....


No photo today. Too exhausted. Just a LONG post....

Nice having the workers come in Monday to Thursday, BUT I feel it’s more a hassle than a help. I get up at 8:30 to shower, dress, tidy up, and get Peter up at 9:30 for their arrival between 9:45-10:15. When the get here, I move him to sit on his Walker seat so they can then sponge wash and dress him. Then do the short exercises. 30-45 minutes later they are gone.

When not here, I sleep till 10 or so with Peter. Especially if I haven’t been able to sleep at night. He gets up sometimes every 30-60 minutes. In his mind if he wakes up he thinks he must need to pee. So he gets up. Most times he doesn’t have to. But I am awake with him each time.

Today, no worker coming over, I hoped to sleep in. Nope. He was up constantly since 4am! Finally I gave up and got up. I felt so upset and angry that I couldn’t sleep in! It carried through the day. Just felt out of sorts! Tired! Cranky!

Tonight I felt terrible because I was so angry that he stood up every 5-10 minutes to go to the bathroom. For years he hasn’t been able to pee into the toilet properly. So I decided I either clean each time, or I hold the urinal for him each time. I hate cleaning, so the urinal was my choice. But today I resented not being able to do anything else except cater to him getting up and down! It’s my lack of sleep and grumpy disposition today that caused me to feel like this.

Most days I just let it go. I put on music, dance, sing, hug him, get him to dance a bit, to smile. Today I had none of that. When I am down he is even more so. He mimics my mood. That’s part of dementia! When he is down he reacts even more with the getting up to pee (even if he doesn’t need to). It’s like it’s a familiar routine and he needs the familiar.

He doesn’t talk anymore. I know he is going to the bathroom, but I ask him where he is going. Most times he says nothing. Or he will say ‘I going to....’ He can’t find the words. He holds his hands up and moves them. I am supposed to know what he needs. Most times I do. Actually 99% I know. But somedays I am a gluten for punishment & I tell him to talk to me. He can’t. He gets frustrated and so do I. I know better. He doesn’t anymore.

It’s strange how we know things but still do the stupid things. Still get upset over things we know are happening and he can’t control. It’s like I am looking for that reason to be angry. Angry at this stupid, terrible, life sucking disease! It’s taken away my friend! I am so ‘pissed off’ about it and falsely get angry at him! Not his fault. But who else do you attack if not the one you love the most? Only it’s not fair to him.

He has gone to bed. I have a few minutes of quiet to write and let out my frustration. To tell myself to get it together and change my mood. I know we all control how we act and react. It’s our choices to be happy or angry regardless of the situation. But sometimes, I just don’t want to know the truth! I just want to be upset. To lash out because I feel it’s not fair that we have this life! I know it’s not just us. So many feel the same. This disease takes a grown adult and slowly turns them into adult children. He is almost like a 2 year old right now in his brain. Which makes me even angrier that this handsome, very intelligent, loving man is deteriorating before my eyes.

Then I wonder. How must he feel? Does he know? Is there a part of him that knows? I think so. Because when I cry, and say I’m so upset, he holds my hand, kisses it, says no as he wipes my tears, and then says he loves me. Then I feel so foolish. Why do I get mad at him? I need a punching bag that’s called ‘Dementia’ to yell at when I feel like this. Because he needs my love and understanding. Not my pain. He is no longer able to process and really understand.

I can see why most spouses and loved ones feel such anger. It’s easy to get into that mode. But oh so hard to comprehend what’s happening and get it turned around. Especially when you just feel so upset and you really want to lash out at the pain! If you don’t know that you can control your reactions, it becomes a never ending cycle of anger on top of anger. Then the person with dementia feels your mood and reacts the same way because they have become so much more sensitive to the mood of people! Now you have two angry people who can’t figure out how to stop. So I can see how it happens.

Luckily through my intuitive business, I have learned the how and why and I can stop the cycle. But, so many don’t know and then don’t understand why the anger never stops. I truly feel I am meant to go through this to learn how to help other care partners learn to handle this without the constant anger, resentment, and all the other negative emotions. Not saying we don’t ever have them. But learning what triggers them and how to turn it around and bring back the love, joy, and happiness regardless of the circumstances.

Much love to all..... ?

Our Dementia Journey - when life gets difficult!

We had a few good days. He stood, walked, talked a bit! Then suddenly we are back to leaning heavily, not walking well, not talking. I realized I can’t hold him up. If this keeps going I truly cannot give him the care he needs.

How can I if I can’t hold him to walk, pee, or?? It doesn’t help him if I get upset because I feel my back & my shoulder sagging from his weight. I wanted him home with me till he decides to leave this life. But if I can’t hold or help him, how can he stay here with me?

If he goes to a home, I fear, will he be cared for well, will he be upset we are not together, will he remember or miss me? Will I have failed him? Oh God it is so difficult! So very very difficult......

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So many things have Changed so much in the last 8 weeks!

So terribly sad ?

Guess a shower here isn’t going to work anymore. Need to rethink how to do this.

He doesn’t comprehend most of what I say. It’s like he doesn’t understand. Which I think is true.

Get a lot of no for answers when he does answer. Even if he means yes.

Now he hardly speaks. I get a lot of hand gestures. When he does try to speak he forgets the words he wants.

I hear a full sentence once a day if I am lucky.

I ask questions he doesn’t answer. I ask again. No answer.

Asking him to stand up, sit down, move over, anything.... He doesn’t respond, just looks at me as if he has no idea what I said! Maybe he doesn’t.

To save a lot of cleaning, we use the hand held urinal.

Well tonight I was turning down the bed for him to sleep. He went into the bathroom. I went in to hold the urinal like normal. He was too fast. He was faced away from the toilet. Peed on the floor, tub, cupboards, wall, pants, socks, slippers.... most times I am always near and prevent these accidents!

I got upset. Then again realized it’s his brain - Doesn’t understand.

After I cleaned up, I cried and said how sorry I was I got upset.

He hugged me said it was okay!

I told him that I hate what this disease is doing to him.

Oct 3, 2021

He said yes, he can do a shower! Realistically? Nope!

Problems ... Sometimes he can, and sometimes he can’t move left side very well. Also can’t understand some things I ask him to do.

I put up the 2 suction cup handles on the walls, placed the non slip mat on the bottom and it was ready!

Get him to the bathtub. Took a while to get him to understand to hold the handles, then lift his leg over the 10 inch side into the tub. Once in there, He was holding tight to the handles and didn’t turn around. I realized he wasn’t going to let go to wash himself. I got him washed, rinsed, and then came the problem. How to get him out of the tub.

Asked him to turn around and get his leg lifted over the tub side. He said he can’t. Great!

I ask him to hold on properly. He is holding the curtain! It’s not strong enough to hold him. He isn’t understanding. I pry his hand off and get him to hold my shoulder. He is leaning on me. I somehow lift and get his one leg over and onto the floor. Meanwhile he is complaining he can’t do this. I eventually get his other leg lifted and over. Then try to turn him around to sit on the toilet seat. I realized standing isn’t going to work.

He doesn’t understand turn around. Move your legs. Eventually he is turned around. I say sit down. He doesn’t. Not comprehending. Again, I eventually get him sitting down.

Now I get the seated Walker to the bathroom door. Get Peter standing. Again to have him move the three steps out the door to the Walker. Not knowing what I am saying. Eventually he does move his legs. Then needed him to turn a quarter turn. Not understanding and left leg doesn’t want to move. After a while he is now ready to sit on the Walker seat. Again, he resists sitting down. Says he can’t. Doesn’t know what I want. Combination of all that. Eventually he sits with me pushing him back and down. Whew!

Wheel him out to the living area. Get him to dry off. Get him dressed into his housecoat again. No sense this late in the day dressing him in pants and shirt.

Now out of the Walker and to get him to sit on the couch. He isn’t close enough to sit down. I ask him to move his legs back toward the couch. Lift his feet to move back. He starts to move forward. I said no back. He isn’t catching what I say. He tries to sit down and to prevent him landing on the floor I push his body back so he lands on the couch. He isn’t happy I did that. But the alternative, falling, was not an option.

Guess a shower here isn’t going to work anymore. So many things have Changed so much in the last 6 weeks! So terribly sad ?

Some days I just don’t know.

I want him home with me. But it gets tough when he spits into his coffee, his plate of food, the floor. He says no to everything I ask. Even if he means yes. Like my kids when they were little. It’s so hard to see.

I have work to do. Haven’t been able to concentrate - since he needs my attention 24/7. I feel so tired. Mentally.

Had to cancel my table for the spirit fair this month. I know I won’t be able to attend. Peter hasn’t been stable enough to have a worker stay with him.

I think would we all be better if he was in a home? Am I being selfish?

Then I think if he is in a home, He could get up to walk in his room and fall. Making things worse. They can’t be with him 24/7 to prevent his falls. So I don’t want him to go.

Somedays I wish I knew exactly what I am meant to do. What road are we meant to follow? It’s like I am living in a fog. Not sure what to do. Not able to see ahead to see where the road is leading.

Our Dementia Journey - Those Difficult Decisions!

Tues Sept 21 at 9am

Peter woke and could not move left leg or body to stand up properly. Body lean heavy to left. Talking gibberish. Gave 2asa He dropped one. Got him another. I think he ended up with just one. Found another on the floor later.

Couldn’t stand up. I could not hold him.

His left leg was way off ahead. Did not know how to move it back to stand.

Got him back on bed and turned over to sleep for a few min. Then had to push him up onto bed. His legs were off the bottom edge.

He pushed a bit on my body with his legs. I pushed his bum up. But he wasn’t comprehending what I was asking him to do.

Eventually got him closer to middle of bed. He slept a bit. 30 min later Asa helped a bit. He talked gibberish but could sort of stand. Peed. Then back into bed.

I suddenly realized with tears in my eyes and heart. If he can’t move. I can’t help him at home. He will have to go to a home. I feel devastated. If he loses movement I can’t move him! I feel heartbroken ?

I guess I need to figure out what home would help with dementia the best…. How do I figure that out?? What do I do? I don’t want him in a home. But, if he can’t move. I can’t lift him!!! So far we have been lucky. His movement came back. What happens when it doesn’t?

Somedays can be so difficult. Coming to the realization that we need to take another step. Journeying to another path that we didn’t expect. So emotional. So difficult. So darn unfair! But, it happens and we learn to come to terms with the decisions that are required. As tough as they may be.

Video on YouTube - https://youtu.be/PZQMAwKK7zk

Sometimes people don’t want to hear the truth because it destroys their illusions.  

I get it!  I truly do.  I have been told that I share too much about Peter and his dementia.  He has always been an open book.  Sharing more of our lives than I am usually comfortable with.  But now, I’m told I should not share.  That yes, it’s my social media, but really people don’t want to hear all the details.  They want to remember him as he was.  

On social media I don’t share ALL the details.  But to those closest to me I do share more by private email.  Still not ALL because I know they couldn’t handle that.  I get it.  I want to remember him as he was as well.

I share because I need to feel as if I am not going on this journey alone.  I share to help those who don’t understand but wish to.  I share to help those who are going through this - to know they aren’t alone.  

My reply was - you don’t want to hear it, how about being in my shoes and living it?  The answer I was given?  If it’s too much for you and you need to share, then maybe it’s time to put him in a home so you don’t need to feel overwhelmed!  LoL ?  I am sorry I shouldn’t laugh.  But just because I feel the need to share, I should get rid of him?  Put him in a home!  Give up on the love of my life for the last 37 years!  Just because I need to share so I don’t feel alone some days.  LoL ? 

Maybe they don’t realize that living with dementia is slowly seeing someone die in front of your eyes.  It’s a grief so profound that it hurts so much.  But don’t share the grief to find people who will understand and show they care.  They don’t want to hear it.  Don’t share to let others know they aren’t alone as they also grieve their loved ones - those already passed and those still living this horror.  Instead shove them away into a home.  That will make it better, right?  

No, it made it worse!  Then on top of the daily grief you also feel the loneliness, judgment, and anger because you shoved him away!  You gave up!  Especially when you feel you can still help him.  

I don’t share because I can’t cope.  I share to not feel alone in my grief.  When or if it ever comes to a point where I cannot handle things.  When it’s too difficult physically or mentally for either of us, then a decision will be made.  For every household that is a personal decision.  It can happen sooner or later, but it is an individual decision.  Neither way is right or wrong for all concerned.  There is no miracle date as to when you make this decision.  No one should be criticized for putting their loved ones in a home or for keeping them home with you.  It’s all uniquely your life.  

But sharing the grief and anguish you feel as you navigate this life.  Seeing your partner slowly die before your eyes.  Hear how he forgets words, tasks, names, even your own....  so much.... sharing to not feel alone in your grief...  But people don’t want to hear...  

Sad how we give our love, understanding, condolences, our ears to hear how they feel, when a person dies.  But when a person is living and his brain and body is dying before you..  People don’t want to hear.... So you resign yourself to living with your grief alone.  Crying alone.  Caring alone.  It’s too hard for them to see what’s happening to their loved one.  Well as I said before - try living it daily.  And no, just because I find it hard doesn’t mean I can’t cope.  I just need a community of people, friends, family, anyone who will take the time occasionally to help grieve with me.  

Because being strong is easy... till it isn’t.  We all have days that the pressure gets too much.  Days we need to vent.  But I guess living with dementia we are not allowed to have days like that.  Because if we do we should just put him in a home instead.  

I know these things were said to me in love.  They were meant to let me know that they are all caring as much as they can.  That they can’t give me more than what they have available.  They don’t want to see or hear how their friend or family member is deteriorating.  It’s too hard for them.  But they do love us.  They do care.  But they don’t want to hear - they can’t because it is too hard for them.  I get it, I understand, and I do love all of you who feel this way.  

I am sorry I shared more than I ‘should’ have.  I am sorry I made our life more real to you.  I will continue to write my blog and YouTube videos and that way you do not need to read it unless you feel you want to do so.  I can still share my thoughts, feelings, helping those who need to hear this, but no longer hurting those we care about and love.  

Going forward, to those who wish to share this journey, my dementia blog is on my website www.HealthLightLove.ca or view my dementia videos on YouTube  https://youtube.com/playlist?list=PL4RWMraRKPy8jC9LKcYrIfPtixrchE4uH

Feel free to message me and let me know your thoughts and feelings.  I am always open to hearing and helping. 

Those who are not wanting to hear about our life, do not check out the videos, do not read the blog.  That is ok.  We all can only handle so much.  My sharing has been too much for you.  I get it. 

Thank you to those brave enough to let me know it’s too much for you. 

I truly do understand and love all of you so much. 

Shared with much love.  


Survival mode... life...

Just when you think ? you have it under control....

Hubby’s dementia is at a steady pace.  No falls, no strokes, ???

But we still live the day to day life of dementia and all else needing to be done - work, living, sleeping....

 

Then we get issues with a fridge and after a few days of trying this and that, it’s broken.   Need a temporary baby fridge while I order a new one full size for delivery.

Then a heat wave hits and we are without a fridge.  Lose lots of food. ($$)

How to handle dementia with a heat wave? He doesn’t comprehend why it’s so hot and why can’t I get ice (no working freezer), why can’t I make it cooler (I don’t control weather and we have no a/c).  Why don’t I open the windows to let the cool breeze inside - there is no breeze and it’s hotter outside.  But through it all he doesn’t understand or comprehend.  

Then I get an intuitive message during heat wave, to call a relative on the mainland.  Find out later she is passed out with temp 108!  If not for my listening to the message to call, she’d be a statistic!  Now I call her daily to check on her.  

Finances and work how to figure out what is next, where to go forward now that things are opening.... 

Things on the to do list keep growing and hubby sleeps late, takes up to 4 hours + to eat breakfast.  The day is gone and again nothing done! 

 

Then I sit here tonight and realize I have been on ‘survival mode’ and suddenly I feel this ‘blah’ of a sudden almost let down.  But not quite.  I feel as if I am waiting for the next shoe to drop!  

My ON is constantly in the on mode.  Waiting.  For.  The.  Next crisis!  

My body has been fighting one crisis after another for a while and doesn’t know how to stop.  

 

Slow down.  Pause.  Breathe.  Meditate.  Regroup.  Relax.  

Something, as an intuitive, I know how to do - But like all humans I allowed life to get in the way and take over!  

It’s time to take back my control and make way for the important things in life to come first.  

Self care!  Meditation!  Breathing!  Pausing!  

It’s so easy for us to allow ourselves to spin out of control.  But when push comes to shove, it’s just as easy to prevent the spinning by staying focused on the important - 

Self care!  Meditation!  Breathing!  Pausing! 

When we do this, all else falls into place and life still spins, but it’s no longer out of control.  

 

No matter who we are, we all fall and need to pick ourselves up again.  That’s the secret!  Pick yourself back up and start again!  The secret! 

#meditation #breathe #selfcare #pause #pickyourselfup #dementia #heatwave

#healthlightlove #intuitiveangelguidedreadings #campbellriverangelcardreadings #campbellriverintuitive

#campbellriverintuitivecardreadings #distantenergyhealingcampbellriverbc #distantenergyhealing

#angelcardreadings #angelhealingenergy  #spiritualjewelry 

#inspirationalnotes

Dementia

  My husband was diagnosed with vascular dementia in 2014.  

Dementia according to the Cambridge Dictionary is ‘a medical condition that affects especially old people, causing the memory and other mental abilities to gradually become worse, leading to confused behaviour’.  

 I use to think Dementia and Alzheimer’s were interchangeable, both meant the same thing.  I needed to learn that Alzheimers, Vascular Dementia, Lewy Body Dementia, Frontal Lobe Dementia, and on and on, are the diseases.  The symptoms of the disease is Dementia (loss of memory and mental abilities).  What helped me was the following example.  Let’s talk about Measles, Chicken Pox, Hives, etc.  These are all the diseases.  The symptoms of these diseases are the ‘spots’.  Once I heard that, it helped me remember dementia is the symptom, not the disease.  

 Each type of dementia and each person is unique.  While people may have some of the same and some completely different symptoms - this is just our story.  I hope it will give you a glimpse into the life of living with a person with dementia.  God willing, we will have many, many years ahead to continue to explore the wonders of this journey.  

Wishing everyone living with dementia, and those caring for a person with dementia, many blessed days ahead.  Wishing for you to realize you are not alone.  Others feel the same joy, frustration, love, anger, and all the other emotions you find yourself expressing.  As well as the grief of losing a person who is still living, but not always there with you.  

I know our journey will continue to change.  Maybe I will write a follow-up years from now.  Maybe I won’t.  We never know what the future holds.  But one thing my husband and I agreed upon many years ago was to embrace the following - the only constant in our life is our ability to adapt to the changes.

#vasculardementia

#dementia

#dementiajourney 

#healthlightlove

#intuitiveangelguidedreadings

#campbellriverangelcardreadings

#campbellriverintuitive

#campbellriverintuitivecardreadings

#distantenergyhealingcampbellriverbc

#distantenergyhealing

#angelcardreadings

#angelhealingenergy 

#spiritualjewelry 

#inspirationalnotes

 

Dementia Realities - posted June 1, 2021

LoL no not our kitty in this picture! But it depicts my topic for tonight. Sleep .

Since Friday I’d guess I’ve had maybe 2 1/2 hours sleep. Last night, lucky if it was an hour. As much as we try to be positive, life does sneak in somedays. Peter kept getting up & doing the opposite of anything I’d ask. A few minutes later, He’d go right back to sleep. I would lay there & just as I’d doze off, he was up again! Every 5, 15, 20 minutes! Finally, I gave up and stayed up at 5a.m.

LoL As usual, that’s when he actually slept! The rest of the day. Well, little things would annoy me more than usual. Couldn’t be my lack of sleep? Yup! Again he’d do the opposite of what was needed and it was getting to me.

Now, he is sorry. Even though with dementia he has no memory of why. I am sorry I got upset. He hugs me and says he doesn’t want to lose me. I tell him again. We are in this together. He can’t get rid of me. I am upset this disease stole my husband. He is upset that this disease will make me leave. So sad.

Reality.

The different ways we view our journey with dementia...

p.s. my card reading video is postponed till after a good nights sleep.

Blessings

#dementia #nosleep #dementiajourney #reality #healthlightlove #intuitiveangelguidedreadings #campbellriverangelcardreadings #campbellriverintuitive #campbellriverintuitivecardreadings #distantenergyhealingcampbellriverbc #distantenergyhealing #angelcardreadings #angelhealingenergy #spiritualjewelry #inspirationalnotes

Posted Wednesday May 26, 2021

Things I’ve Learned

Things I learned in the first 4-5 years as a caregiver. My husband can’t learn new ways of coping, I can. 

‘New day - New way’, meaning what worked one day may not the next.  Be flexible, understanding and willing to change with each moment. 

‘Creating moments of joy’.  A hug and the feeling behind it will mean more to him than any words we say.  

I am also learning to help him keep his dignity.  Not dwelling on the issues that are unpleasant for both of us, such as bathroom accidents, etc. Clean it up and move on. He feels bad enough without me making it worse by getting upset. 

It’s not always easy to follow all these things.  But I try my best and that’s all any of us can do.  

Take time, maybe while he is sleeping, in am, pm, or whenever, to just ‘be’.  Relax, meditate and take care of myself. 

That hug he gives me, I give him, or I ask him to give me, helps both of us to be in the moment. We sigh, relax and hold on for a few minutes. Then we can continue onward to the next moment.

#dementia

#vascular dementia

#dementia tips & ideas

#healthlightlove

#intuitive angel guided readings

#campbell river intuitive

#inspirational notes

#distant energy healing