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Hello HereForDad:
Sorry it took me a while to reply. I am not online a great deal.

I am sorry for what you all are experiencing. Yes, it is hard to
watch. Like watching the reverse of a child's development in
an adult. All you can do is keep him safe and love him where
he is for as long as you can as much as you can. No matter the
stage, tell him so. Eventually he will be bedridden but not yet!
Take everyday one day at a time.

You might be able to get a power lift recliner( look more comfortable) and an upright walker.
They might be paid for by Medicare paid under Part B as durable medical equipment.

UPWalker | The Revolutionary Breakthrough in Upright Walking!

Meanwhile, you take care of YOU! Whatever you need to do for
yourself, do. If you need to talk to a counselor do it!

I did throughout Mom's journey and after she died(11 years this
September) It was helpful. I wrote in a journal which helped me
tremendously. I still have them and look back on my journey(good, bad and awful) from time to time. Much of what I felt was anger,
sadness and terror. Yet, there were times of joy. I took what I could when I could.
Eventually, I came to be resigned to it all.
Acceptance took a long time.


You are stronger than you know, courageous too. Let your family
give you any support you need.
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Hello music lover,

Thank you for your reply.

He was walking ok. We had a physical therapist come to the house for 3 months because his legs were getting weaker and he fell a few times. The other day his back started hurting and he is having a very difficult time getting up from a sitting position. He is bent over when walking since then, using a walker. Eventually, he will be bed ridden :( and I am trying to get us as ready as possible for that.

We have a medical recliner but it is THE most uncomfortable chair :( hard as a rock. I really just want to give it away.. because it’s in the way. Not sure where they got it... it has been here since way before we came.

This really has been very hard. I live in a state of depression.. I have never been depressed in my life. Its so hard to see him slowly disappear before my very eyes.
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My husband who had vascular dementia, started falling all the time, and would walk extremely slow. He ended up getting aspiration pneumonia, and almost died, and because he was in the ICU, and then on the pulmonary floor, completely bedridden for about 2 weeks, by the time he was able to return to our home, he was completely bedridden and there was no turning back.
He came home under hospice care, and I had his hospital bed set up in our living room, so he could be close to all what was going on. My husband at that point had a supra pubic catheter, and I had to hire an aide to come put him on the bedside commode every morning so he could poop. He lived that way for the last 22 months of his life.
I am grateful that I was able to keep my husband home, as he always said that he wanted to die at home,(and he did) but it was hard, I cannot lie. If not for the grace of God, I wouldn't have been able to continue caring for him like I did.
So you will probably soon have to decide which route to go with your dads care. Either by placing him in a memory care facility, or hiring full-time help(with dads money)to assist with his daily care. You can also see if he might qualify for hospice care. You can use their services either in a facility or at home. They will have a nurse come once a week to start, and an aide to come bathe him a couple times a week. They will also supply the hospital bed(when needed), along with any other needed equipment, all supplies(diapers, chucks, catheters etc.)and all needed medications, all covered 100% under dads Medicare. Just be aware though that even if you get hospice involved in the home, 99% of dads care will still fall on you or hired help. Whereas if he's in a facility, they will just be added help to his already 24/7care.
It's hard. I know. But you must do what is in the best interest of not only your dad, but you and your family as well. God bless you.
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HereForDad Apr 2021
Hello funkygrandma,

Thank you for your response. It is good to know that the only answer is not memory care or a facility. That it’s possible to keep him home where he needs to be. He has lived in his home that he built for over 40 years and yes he wants to die at home… His home. My mom is here with us, she’s 84 also, and at this point she is doing all of the one-on-one cleanups when dad has accidents, which I feel really bad about but she doesn’t think that his pride will let me at this point. We are here to help her. We know that hospice is our next step but we are putting it off as long as possible.

He was walking ok. We had a physical therapist come to the house for 3 months because his legs were getting weaker and he fell a few times. The other day his back started hurting and he is having a very difficult time getting up from a sitting position. He is bent over when walking since then, using a walker. Eventually, he will be bed ridden :( and I am trying to get us as ready as possible for that.

I’m so sorry that you had to go through all this alone. And I am so sorry for the loss of your dear husband. I have my mom, my husband and God. To rephrase I realize that you were not alone and that you had God also :)

I hope you don’t mind my asking, but, were your husband's bowel movements always that regulated? My dad’s are approximately every 3 days and could be at anytime during that day. Was his catheter put in place due to him being bed ridden? Any advice or ideas you have are more than welcome. God bless you also!
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Is it safe for him in his house? Is there an easy way for you to move him around in the house in a wheelchair?
Transferring to a wheelchair or to any chair, bed, toilet or commode can be difficult a Sit To Stand will help.
When he no longer has strength to support himself a Hoyer Lift is necessary.
Wheelchair, Sit to Stand and Hoyer's do not do well on carpet so if there is carpet replacing that with a hard surface will make things easier.
Even if you do not reach that point yet walking on carpeting can be difficult. People with dementia often shuffle and carpet can pose a trip hazard.
Do you have Hospice?
They will provide all the equipment that you need.
Hospital bed, wheelchair, supplies, medication. A nurse will visit 1 x a week and a CNA will come 2 to 3 times a week.
Is there a way that you can bring dad back to where you live so you will be near your family? 2 years is a long time to be away from your children and grandkids.
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HereForDad Apr 2021
Hello Grandma1954,

Thank you for your reply. We don’t have a wheelchair yet, or a sit to stand, (I’m not sure what that it, but, it sounds like something we are going to need). I think I may know what a hoyer lift is.. my husband’s mom was a diabetic who lost both legs and she had a lift under her in bed that they used to lift her out of bed and into her wheelchair. This might also help tremendously. Could you please tell me more about these?

Dad’s bedroom has carpet.. it’s very low. They have a small half bath he uses that is connected to their bedroom. A wheelchair would not fit into this bathroom. The living room is also carpeted. This carpet is a medium height. His chair is a few steps into the living room. Though it would seem easier to point his chair toward the doorway exiting the living room, it wouldn’t be good because, as it is now, he has full view out of the patio door windows looking outside. He spends all of his day, either in his bed or his chair.. occasionally we get him to sit at the dining room table for breakfast.

Hospice is a next step... we are putting it off as long as we can... the decision to make the call is essentially up to my mom. The time will come when we will need equipment and supplies though that they can provide.

Our hope has always been to move mom and dad to our Kentucky home. We drove them down the first Christmas we were here. Dad thought we were kidnapping him and non stop wanted to go home. As his condition progresses, I feel more and more that it would be just cruel to move him to an unfamiliar place.. he is already so lost :( Our 3 boys are fully grown.. they are learning independence in our absence. Our middle son brought 3 of our grand babies up last week for Easter :)
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Why do you feel this? Is your father falling or falling more? Is his
gait off? Balance issues? Have you spoken to his doctor? He may need an assessment.

My mother got to the point where she lost the ability to walk.
It was gradual and then she began to fall more. Then not walking
at all. I purchased a medical recliner for her that kept her safe. I read about the 7 stages of dementia so I figured that would happen. That was hard to accept...the gradual decline and the last stage.

Once he cannot walk, you may need a hoyer lift to toilet him or toilet him from the bed as well as assistance. Do you have aides to help? Or family?
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HereForDad Apr 2021
Hello music lover,

Thank you for your reply.

He was walking ok. We had a physical therapist come to the house for 3 months because his legs were getting weaker and he fell a few times. The other day his back started hurting and he is having a very difficult time getting up from a sitting position. He is bent over when walking since then, using a walker. Eventually, he will be bed ridden :( and I am trying to get us as ready as possible for that.

Sorry... I meant to reply to you directly...
We have a medical recliner but it is THE most uncomfortable chair :( hard as a rock. I really just want to give it away.. because it’s in the way. Not sure where they got it... it has been here since way before we came.

This really has been very hard. I live in a state of depression.. I have never been depressed in my life. Its so hard to see him slowly disappear before my very eyes.
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