In my case, my mother was terrified of falling. She had Parkinson’s disease which causes strength and balance issues.
My mother’s doctor ordered home health so she could benefit from doing exercises specifically related to Parkinson’s disease.
The physical therapist, occupational therapist, a nurse and an aide were a complete team that helped mom function better. I found that mom responded better to the aide telling her to get into the shower than when I did.
A marriage of 69 years is wondrous and I applaud your devotion and determination to keep your beloved at home with you and care for her yourself. I hope that you have family nearby who can come in and give you the breaks that you need to keep up your own health and sanity. As your wife's disease progresses and her needs become ever more acute, the demands on you will increase and may become much more than any one person can do, no matter how fierce your love and the determination.
At 88, the strains of 24/7 caregiving is taking its toll on your health and your wellbeing; you need to develop a Plan B. If you haven't done so already, have all of your legal paperwork in order and easily found by whomever you assign as medical and durable POA, make all of your healthcare wishes clear to your doctors, your estate attorney and your assigned POA.
Because of the post-pandemic staffing shortages in most every area of the country, there are often waiting lists for any type of facility and you should be placed on the waiting lists for the facilities of your choice and you should do this for varied levels of care. Your dear wife requires 24 hr care now and should, heaven forbid, something happen to you, there needs to be a plan in place for hers and your own care and whatever level of assistance you may require.
I don't know if you've yet toured any facilities, but many of them are very nice and completely different from the nursing homes of even 10 - 20 years ago. It's a competitive market with Baby Boomers aging and most all have very upscale rooms and common areas, outdoor gardens, social activities, decent to very good food, and you'd be surprised at how much they've modernized the facilities and the approach to care.
AL facilities have small apartments and some have the capacity for increasing care when needed. If Medicaid will be needed, that's a whole set of issues to become versed on, in case it's needed.
We lost my Dad suddenly to Covid and I had to take the reins on everything. Mom survived, but needed to be in-care and she's been in the NH a bit over 2 yrs now, in a MC unit now to best meet her needs. As hard as it's been for her to lose her beloved husband and every aspect of the good life that they lived together, it's also been hard for me to manage it all. While so deeply grieving, I had to pull myself up and dig into managing the estate and I am so very grateful that Dad left everything in good order for me to step in and manage it all. He even left a document with all passwords so that I could access every account; it's been a lot, but I'm managing.
Please, however hard it is to face one's own mortality, make certain that you make all arrangements in advance so that your wishes are followed and nothing is left to chance, especially the care of your beloved wife. We never know what tomorrow will bring.
I wish you all the best of loving devotion as you care for your dear wife, just please, take care of yourself too.
Luta65, thank you so much for your great, timely and in depth advice. I have taken care of some of the legal actions you've suggested, some I haven't gotten around to, and others I hadn't even thought of.
There is family fairly close by (within an hours drive), a daughter, a son and 6 grandchildren. My son and daughter come by frequently, bring food and visit. Our son is currently spelling me a couple times a week, so that I can go to PT. The grandchildren do not come by, because they all have children and they all seem to be sick constantly - don't want to pass anything on to the old folks.
I have checked in to a few local facilities, and been invited to take tours, but have not done that yet. Putting it off because it's not something I really want to consider, although I do know that time will come eventually.
Again, thank you for taking the time to respond. Happy Holidays to you.
It might be that they forget or think they already did it or even don't know how. While I was taking care of Mom, I just ran the bath first and then told her it was ready, nice and warm, then followed her to the tub. I did not simply remind her to brush her teeth, I watched her put the toothpaste on and start the brushing. She would follow through with flossing and the mouthwash, as once she got going she was on automatic. At eventual assisted living I had to remind the caregivers to do the same, that a reminder was not going to work. They already knew to do that at memory care and had to take her toothpaste to her, not leave it in her bathroom, because she started eating it. She actually thought it was food. Hand washing was never an issue, except that she would over wash and end up with soap everywhere.
Fred, my granny no longer was able to understand hygiene. She would refuse if asked. She would scream help me while anyone helped her. It was gut wrenching to deal with.
The family made the decision to take away her right to refuse and had her showered regularly and other hygiene done for her.
She was very unhappy while it was taking place but, quickly forgot and her physical health was better for it.
Sometimes our choices are hard and harder and gut wrenching. Looking at the big picture really helps. Because we all know we feel better when certain things happen, we make those difficult decisions for our loved ones that no longer have that ability.
Just have it done and know that she will feel better being clean, have less chance of infection because she's clean and she won't be offensive to others being clean. Not to mention exposing others to illness by not being clean.
Best of luck, this is a tough one.
Search this forum, there are lots of threads about how to make it easier, explain why they resist, etc.
Google medical supplies. This is where you will find the products hospitals and facilities use, such as no rinse, moistened wipes, etc.
As said, do not ask. The answer will usually be no. I just said "Mom, time to shower" "Mom time to get dressed". I believe as the Dementia progresses they become like toddlers. Toddlers don't always want to get a bath, especially showers. For my Mom, she had a walk-in shower. I put a small heater in there to warm the room up. Even a/c can be cold on wet skin. I had a shower chair she sat on as far from the shower spray I could get her. I had a hand-held shower head and rinsed her down with warm water. Suds her up and rinsed her off. There was a bar on the wall so I had her stand and hold on to it with her back to me and washed the areas she had been sitting in, rinsed. Washing her hair she was pretty good about. I used baby shampoo in case it got in her eyes. I had the towel near by so I wrapped her up in it, placing a small one on the toilet cover. I dried her and put her undies on in the warm room. Because it was an old powder room I could not fully dress her in there.
I always led Mom. Took her to the sink, put some liquid soap in her hand, sometimes she knew what to do sometimes I had to do it for her. When she brushed her teeth I put the paste on the brush and handed it to her. And smells, I was like Teethgrinder, I was blunt, I told Mom she didn't want stink did she.
My daughter worked in NHs. She says to get residents to do what she wanted she would give them the impression they made the decision. "Mr. Jones wouldn't you feel so much better all clean, shaved and in fresh clean clothes?" The answer was usually yes.
With dementia, they have no clue about hygiene. Ugh, the lack of handwashing made me cringe when my mom with dementia was living with us. The lack of short term memory means I could not believe her when she told me she "just" washed her hands everytime I would ask her to do so. My mom would want to help cut up food but would get mad when I told her to wash her hands so I'd just say, nope I'm all set, thanks.
So, try to be assertive about these things. "Time to take your shower" not "would you like to take a shower".
As far as placing her somewhere at some point, I wonder if going into assisted living together, in a 2 BR unit for example, might be the best plan. You'd be together, meals would be provided, they could shower her, do her meds, etc. etc. It would take a lot of pressure off of you and give you an opportunity to socialize which is so limited when caring for someone with dementia.
When my late husband(who had vascular dementia)became very unsteady on his feet, I would have to take him to our walk in shower and sit him on the shower chair and get halfway in myself to help wash him up. At the time I did this every other day with him. I also had to shave him and trim his goatee. I would not give my husband a choice. I would just say, ok it's time now to get in the shower, or time to trim up your goatee, and he would begrudgingly let me do what I needed to do. And as he progressed, I had to brush his teeth for him. You can also buy extra large body wipes and waterless shampoo and conditioner caps on Amazon or Walmart.com if you find that easier than trying to get her in the shower. I used both those items on my husband whenever needed, especially after he became bedridden.
It's a difficult issue and one that only gets worse over time.
The suggestions below are your guide and there truly is no perfect way to manage this aspect of care. As long as your LO is able to help with washing herself, brushing teeth, etc., set her up for cares and hand her what she needs: a warm washcloth to wash her face, which you'll then help her to dry, etc.
My mom, 88 in a MC unit, is in a room setting that discourages hygiene and it drives me nuts. The toilet is in a separate small room inside of her private one and the sink is all the way across the room near the exit door. She forgot hand hygiene after toileting long ago. When I visit her, depending on her strength that day, I'll bring her to the sink and assist her to wash her hands, dry them etc. On weaker days, I just provide her with a wet washcloth and towel in her chair.
These basic self cares are comforting for most dementia patients and encouraging them to do as mush for themselves as possible is always good, they're just decreasingly able to understand the need for it.
I hope that you're able to wave the white flag at some point and work toward having your beloved placed so that your own life isn't lost to caring for someone who actually requires a village of 24/7 care providers. Until that time comes, do your best.
Thank you for the advice and encouragement. I'm new at being a caregiver and am learning, OJT. This site has been the most helpful for me so far. So many people willing to share their experiences and provide advice makes me feel a lot better knowing there is somewhere to go when the need arises. However, one of my problems is that, so far, I'm not willing to consider placing my wife of 69 years, in any sort of facility. At my age (88) and knowing the future dealing with this terrible disease will get worse, I don't know how I could survive.
You can not "convince" a person with dementia to do some things. At some point they do not "know" how to do ADL's (activities of daily living) YOU need to help with showering, you need to bring your wife to the bathroom, you need to clean her after toileting, you need to wash her hands. You need to help her brush her teeth, you need to help dress her. encourage her to do what she can but it is you that will be taking over many of these tasks.
Fred3202, I’m sure you know already that “convincing” a dementia patient can only result in futility, then in frustration for you.
If you can afford it, or if your wife is eligible for hospice, trained CNAs and other fully trained hands on care specialists are sometimes able to do well with this.
As to day to day personal care you sometimes need to give up on traditional self care and go to moistened wipes, sponge baths, and powdered “shampoo” to maintain basic hygiene.
You are always an important part of the balance-if something becomes overwhelmingly difficult/impossible to perform, for either for you, you will need to acknowledge that it will be time to amp up the level of care she receives.
Be certain that you are taking good care of yourself, and treating yourself well. Caregiving is NOT ever easy.
With my grandfather, I would just announce that it was shower time. I'd lay out all the towels and such and tell him I needed to do laundry and wash what he was wearing. He was such a doll, it worked every time. I found that telling gently, not asking, was the way to go.
With my mom, it's harder. She doesn't smell it, therefore it doesn't exist. I tell her that everyone else can smell the "old lady smell" (she hates that), and her vanity gets her into the shower. I feel mean doing it, but not as mean as I would if she went out into the world or a friend came over and she smelled funky without knowing it.
My mother’s doctor ordered home health so she could benefit from doing exercises specifically related to Parkinson’s disease.
The physical therapist, occupational therapist, a nurse and an aide were a complete team that helped mom function better. I found that mom responded better to the aide telling her to get into the shower than when I did.
Best wishes to you and your loved one.
I've found the forum to be very helpful too.
A marriage of 69 years is wondrous and I applaud your devotion and determination to keep your beloved at home with you and care for her yourself. I hope that you have family nearby who can come in and give you the breaks that you need to keep up your own health and sanity. As your wife's disease progresses and her needs become ever more acute, the demands on you will increase and may become much more than any one person can do, no matter how fierce your love and the determination.
At 88, the strains of 24/7 caregiving is taking its toll on your health and your wellbeing; you need to develop a Plan B. If you haven't done so already, have all of your legal paperwork in order and easily found by whomever you assign as medical and durable POA, make all of your healthcare wishes clear to your doctors, your estate attorney and your assigned POA.
Because of the post-pandemic staffing shortages in most every area of the country, there are often waiting lists for any type of facility and you should be placed on the waiting lists for the facilities of your choice and you should do this for varied levels of care. Your dear wife requires 24 hr care now and should, heaven forbid, something happen to you, there needs to be a plan in place for hers and your own care and whatever level of assistance you may require.
I don't know if you've yet toured any facilities, but many of them are very nice and completely different from the nursing homes of even 10 - 20 years ago. It's a competitive market with Baby Boomers aging and most all have very upscale rooms and common areas, outdoor gardens, social activities, decent to very good food, and you'd be surprised at how much they've modernized the facilities and the approach to care.
AL facilities have small apartments and some have the capacity for increasing care when needed. If Medicaid will be needed, that's a whole set of issues to become versed on, in case it's needed.
We lost my Dad suddenly to Covid and I had to take the reins on everything. Mom survived, but needed to be in-care and she's been in the NH a bit over 2 yrs now, in a MC unit now to best meet her needs. As hard as it's been for her to lose her beloved husband and every aspect of the good life that they lived together, it's also been hard for me to manage it all. While so deeply grieving, I had to pull myself up and dig into managing the estate and I am so very grateful that Dad left everything in good order for me to step in and manage it all. He even left a document with all passwords so that I could access every account; it's been a lot, but I'm managing.
Please, however hard it is to face one's own mortality, make certain that you make all arrangements in advance so that your wishes are followed and nothing is left to chance, especially the care of your beloved wife. We never know what tomorrow will bring.
I wish you all the best of loving devotion as you care for your dear wife, just please, take care of yourself too.
Have a blessed holiday season, Fred.
There is family fairly close by (within an hours drive), a daughter, a son and 6 grandchildren. My son and daughter come by frequently, bring food and visit. Our son is currently spelling me a couple times a week, so that I can go to PT. The grandchildren do not come by, because they all have children and they all seem to be sick constantly - don't want to pass anything on to the old folks.
I have checked in to a few local facilities, and been invited to take tours, but have not done that yet. Putting it off because it's not something I really want to consider, although I do know that time will come eventually.
Again, thank you for taking the time to respond.
Happy Holidays to you.
The family made the decision to take away her right to refuse and had her showered regularly and other hygiene done for her.
She was very unhappy while it was taking place but, quickly forgot and her physical health was better for it.
Sometimes our choices are hard and harder and gut wrenching. Looking at the big picture really helps. Because we all know we feel better when certain things happen, we make those difficult decisions for our loved ones that no longer have that ability.
Just have it done and know that she will feel better being clean, have less chance of infection because she's clean and she won't be offensive to others being clean. Not to mention exposing others to illness by not being clean.
Best of luck, this is a tough one.
Search this forum, there are lots of threads about how to make it easier, explain why they resist, etc.
Google medical supplies. This is where you will find the products hospitals and facilities use, such as no rinse, moistened wipes, etc.
I always led Mom. Took her to the sink, put some liquid soap in her hand, sometimes she knew what to do sometimes I had to do it for her. When she brushed her teeth I put the paste on the brush and handed it to her. And smells, I was like Teethgrinder, I was blunt, I told Mom she didn't want stink did she.
My daughter worked in NHs. She says to get residents to do what she wanted she would give them the impression they made the decision. "Mr. Jones wouldn't you feel so much better all clean, shaved and in fresh clean clothes?" The answer was usually yes.
So, try to be assertive about these things. "Time to take your shower" not "would you like to take a shower".
As far as placing her somewhere at some point, I wonder if going into assisted living together, in a 2 BR unit for example, might be the best plan. You'd be together, meals would be provided, they could shower her, do her meds, etc. etc. It would take a lot of pressure off of you and give you an opportunity to socialize which is so limited when caring for someone with dementia.
I would not give my husband a choice. I would just say, ok it's time now to get in the shower, or time to trim up your goatee, and he would begrudgingly let me do what I needed to do. And as he progressed, I had to brush his teeth for him.
You can also buy extra large body wipes and waterless shampoo and conditioner caps on Amazon or Walmart.com if you find that easier than trying to get her in the shower. I used both those items on my husband whenever needed, especially after he became bedridden.
The suggestions below are your guide and there truly is no perfect way to manage this aspect of care. As long as your LO is able to help with washing herself, brushing teeth, etc., set her up for cares and hand her what she needs: a warm washcloth to wash her face, which you'll then help her to dry, etc.
My mom, 88 in a MC unit, is in a room setting that discourages hygiene and it drives me nuts. The toilet is in a separate small room inside of her private one and the sink is all the way across the room near the exit door. She forgot hand hygiene after toileting long ago. When I visit her, depending on her strength that day, I'll bring her to the sink and assist her to wash her hands, dry them etc. On weaker days, I just provide her with a wet washcloth and towel in her chair.
These basic self cares are comforting for most dementia patients and encouraging them to do as mush for themselves as possible is always good, they're just decreasingly able to understand the need for it.
I hope that you're able to wave the white flag at some point and work toward having your beloved placed so that your own life isn't lost to caring for someone who actually requires a village of 24/7 care providers. Until that time comes, do your best.
At some point they do not "know" how to do ADL's (activities of daily living)
YOU need to help with showering, you need to bring your wife to the bathroom, you need to clean her after toileting, you need to wash her hands. You need to help her brush her teeth, you need to help dress her.
encourage her to do what she can but it is you that will be taking over many of these tasks.
If you can afford it, or if your wife is eligible for hospice, trained CNAs and other fully trained hands on care specialists are sometimes able to do well with this.
As to day to day personal care you sometimes need to give up on traditional self care and go to moistened wipes, sponge baths, and powdered “shampoo” to maintain basic hygiene.
You are always an important part of the balance-if something becomes overwhelmingly difficult/impossible to perform, for either for you, you will need to acknowledge that it will be time to amp up the level of care she receives.
Be certain that you are taking good care of yourself, and treating yourself well. Caregiving is NOT ever easy.
With my mom, it's harder. She doesn't smell it, therefore it doesn't exist. I tell her that everyone else can smell the "old lady smell" (she hates that), and her vanity gets her into the shower. I feel mean doing it, but not as mean as I would if she went out into the world or a friend came over and she smelled funky without knowing it.