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I've been caring for my husband in our one-bedroom condo with wide doorways (he uses a wheelchair) and a walk-in tub. I've found competent caregivers to give me a break four to six hours a day, approximately three days a week. But recently my husband has had several more prolonged bouts of delusion and confusion (walking into the walk-in tub and turning on the whirlpool buttons.) He is choking more often and sometimes gasps for breathe. I don't know if it is time to consider a memory care residence. I sometimes feel overwhelmed. I've been told to "get ahead of the problem" but how does one know when it is time to make this major change?

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Have you consider hospice care that can come in be some support for you?
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If you find that you do not have the energy, strength, know-how or enough sleep to continue caregiving... it is time to pass the caregiving baton on to others. Do not feel guilty, but realize that your loved one needs more help than you can provide.
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As a caregiver and a retired nurse I was in your shoes 7mo ago. Hub had a brain injury from accident that is now Alzheimer’s too and in June had covid for first time… it’s been downhill faster since. This journey is awful with the outcome certain and no one but God knows how his days are numbered. When he wasn’t safe at home and we have a pool and he would sleep walk in the street at 2am and roam or sleep in chair not remember to eat or drink and needed help with ADL I knew it was time. His neurologist told me earlier to do memory care but I thought no not yet… it was time his dr was right and my primary said he saw my health declining too. I chose a memory care that staff ratio was better than our parents AL and they are more focused to provide care. The secure facility prevents elopement and meets all his meds. Visiting drs got rid of need to take him out for appts. All his needs are being met. I did give them the first few weeks to eval him and help him adjust and I discovered that going 2 times a week to see him is enough… he’s less agitated and still thinks I’m there all the time but it affords me time now to take care of me and breathe. He’s a DNR because in the event something happens and he stopped breathing there is nothing they could do that would reverse the symptoms. That realization will be one of the hardest ones to accept. We are so use to taking care of them and doing everything to make things better but there truly is nothing that will help reverse this awful disease. He would want you to live life to the fullest and that’s what I’m now doing. No one fully understands unless they too are in our shoes and don’t let anyone try to have you believe otherwise. This is the cruel reality of dementia. Praying for all experiencing this too. It doesn’t mean we love them any less . We actually love them so much that we want them safe and well cared for for what ever time they have left.
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Fawnby Apr 14, 2024
@Db2024,
Thank you for this thoughtful and enlightening post. Your husband is very lucky to have you in charge.

I'm particularly interested that Covid caused a downhill slide for him. I know others who have told me the same thing, and I have observed declines in friends such as you mentioned. One, who had no prior cognitive issues before mild Covid, is part of a brain study researching why his brain fog never went away, resulting in his finally entering a continuum of care facility where he can step up to memory care when necessary. This effect of Covid on cognitive decline is presently being studied further in the US and other countries. It's why I am so adamant about protecting my husband, who has dementia, from getting Covid. We don't want his decline to be hastened by that.

I feel that this aspect of cognitive decline/Covid has been buried now that people want Covid to be over, even though it isn't. Could you post more about your husband's experience in getting Covid, whether it was a mild case, and how he contracted it? What anti-viral drugs did he take for Covid when he had it? Also why you think it contributed to his decline. This is not a scientific study. I just want to know how to help my husband if he gets Covid despite all our precautions. I respect your opinion because you can approach the issue from a nurse's point of view.

I'm glad you found a good place for your husband.
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MarciaWhitney: Now is the time for residence in memory care, especially with the choking aspect at play. You, a solo caregiver, have done a stellar job. It is definitely time to "get ahead of the problem," i.e. many hands caring for your DH (Dear Husband). Best of luck, dear lady.
Llamalover47
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Thank you -- all -- for your kind, thoughtful responses. Much to think about .... Marcia
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I just made this decision on Thursday of this week. Mom was in AL for three years due to Lewy Body dementia. She exited the building four times in a month while confused. She has no idea where she is when she gets outside and gets lost even in the building. She also was no longer safe with toiletries. The move has been more stressful on me than her. It means all new staff to teach what moms needs are and her habits. It takes a few weeks for staff to really get to understand and know a resident. That means constant visits. In the end at least I know mom is safe!! It sounds like it is time for you to tour a facility and make a decision. You will still need to monitor his care. This job does not end when they are admitted but you can get more time for yourself. Good Luck..
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Although you've done many things to age-proof your condo, it sounds like your husband needs skilled care at a level above what you can provide him. Please do consider moving him to a memory care facility. Look for a facility near your home so that you can visit him often and oversee his care. Hopefully all of your paperwork is in order and if not that your husband is still capable of signing legal papers. You both need to set up: wills, living wills with your advance medical directives, Powers of Attorney for financial and medical affairs. You also need to be on file with Social Security and Medicare to be able to speak on his behalf. Most financial institutions have their own POA forms.
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I moved my husband into Memory Care after taking care of him through several years of dementia. I made the choice when I could no longer keep him safe at home. I'm so glad that I moved him. He was in Memory Care for 5 months. Toward the end of his life, he could no longer walk and he was having troubling swallowing. A week later, he lapsed into a coma and then passed away 5 days after that. I'm praying that God will give you wisdom as you have to make these hard choices.
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It is a difficult decision but once you make it you will feel relief. I made the decision after my husband fell at home and broke his hip and neck. Realized while he was in the hospital confused and in mitts because he was picking at his dressing as well as IV sites that he could not come home. Chose your facility wisely because nobody will take care of them like you would so you have to decide what you can live with as far as MC facilities.
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The ahead approach is the answer. My brother & I did that with his father and the wife and my mother, we checked out over 15 facilities, made the decision and moved the father from AZ and our mother from NC.

Good thing because the father died and the wife who has dementia was already in AL, after he died we moved her to MC, where she still is now.

Always better to be ahead of the curve. Dementia has no cure, he will continue to get worse, consider doing it now.

Take care of you too!
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I think getting ahead of the problem is a very good way to approach the memory care question.

If you're feeling overwhelmed, it's time for him to go to memory care.
I've done homecare for a lot of people in exactly the situation you're in with your husband. What I always told a family was that it's usually better for a person to go to AL or memory care before the dementia advances to the point where they are unable to acclimate to a new place. I think now would be a good time to find a memory care residence for your husband.

There are even facilities that have independent senior living (for the spouse without dementia) and a memory care facility all at the same location. This way a couple can see each other all day, but the competent spouse is not responsible for care. This could also be an option for you.
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It is time to consider a higher level of care when you are prompted by circumstances to ask the question. Which seems to be yuour situation. Your husband's care may be getting too much for you to manage safely even with some part-time help.

Can your husband's doctor do a re-evaluation of his condition and needs?

Find out if there is a facility nearby for a temporary or Respite stay.

The doctor's assessment plus a trial run at a facility might help you decide what should be done next.
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This is an extra helpful answer, especially about the choking when trying to eat.
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I’ve been taking care of my mother alone, nonstop, 24/7, for 2 yrs now. She was not only like your husband, but she was also aggressive, mean, delusional, and accusatory towards me. But, I love my mom, and as the disease progressively has gotten worse, she doesn’t sundown anymore. My mom has finally calmed down, as the diseases progresses. If I were you, I would get an order from your doctor for respite, and/or in the skilled nursing facility for 30 days to see how it works. My only concern with the latter, is that, your husband will be at the mercy of the caregivers, and, not all of them are equally good personalities, or created equal.
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BurntCaregiver Apr 13, 2024
@FamilyLove

The OP can be an advocate for her husband if he goes into memory care for a 30 respite stay to make sure he's getting decent care.
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I’ve been taking care of my mother alone, who was not only like that, but she was also aggressive, mean, delusional, and accusatory towards me. No one helped me do anything. My mom finally calmed down, as the diseases progresses. She is on cognitive meds, w/her other regular meds that she takes. Only now, I’m getting a PCA come to help me w/mom’s ADL’s. If I were you, get an order from your doctor for respite, and/or the in the skilled nursing facility. My only concern with the latter, is that, your husband will be at the mercy of some CNA’s and caretakers, and, not all of them are equally good, or created equal.
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Our geriatric physician says that the time is when the dementia patient can no longer be safe at home. You seem to have reached that point.
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If your husband is "choking more often" my first thought is that his food is going into his lungs and not his stomach. That can and will cause aspiration pneumonia which is often fatal.
My late husband with vascular dementia developed aspiration pneumonia and almost died. He ended up with sepsis and septic shock and completely bedridden after that.
His doctor said that because of my husbands dementia, his brain was forgetting to tell his throat to close while eating and drinking, thus allowing everything to go into his lungs.
It's very serious, so please have your husbands swallowing tested before it's too late.
And to answer your initial question....it's usually time when you have to ask the question.
I wish you well in finding the appropriate facility for you husband where you can get back to just being his loving wife and advocate.
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FamilyLove91 Apr 13, 2024
My mom has difficulty chewing and swallowing food, so now she gets mechanized prepared meals, which she can easily swallow.
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Marcia,

Please know that choosing to be an advocate for your husband in a facility is a wise option.

In many cases, an advocate for a resident in a facility can accomplish more than a person who is caring for family member at home. A facility provides an entire staff at their disposal 24/7.

Since you have hired caregivers to help out during the week, you already know that this is too much for you to handle on your own. Even with part time help it becomes too much.

There are several areas of your posting that confirms for me that it’s time for your husband to enter a facility.

Your husband is delusional and confused. He chokes and gasps for air. You feel overwhelmed.

Just feeling overwhelmed is
reason enough for placement, let alone dealing with the additional issues that are present.

Your husband will only need more help as time goes on.

How long have you been his caregiver at home? I was my mom’s caregiver at home for years. I know how exhausting it becomes.

Staff members in facilities have stated that it is best to place someone sooner rather than later.

Placing your husband sooner will allow him to adjust better to his new surroundings. It’s better for you too. You can return to being his wife and oversee his care.

Have you toured any facilities in your area? Go visit a few of them when the caregivers are with your husband.

Wishing you and your husband well.
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FamilyLove91 Apr 13, 2024
This is wonderful advise you gave that dear wife. I’ve done all those things that you described they do in a nursing home, and I am exhausted. I feel like I have PTSD. The biggest problem has been not having enough money.
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If your husband's behaviors are "recently" new and worsening, please have his checked for a UTI or stroke first (the choking made me think of a stroke possibility).

The decision to transition him to facility care happens when the caregiver is overwhelmed.
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