I am 82 and have a full professional life that I do not want to give up. I ruminate about what is best to do for him and end up feeling angry at him a lot, but don't direct it at him. I fear he will become bedridden and my life will become caregiver.
I am sorry your DH has a form of dementia. Do you know what type?
Alzheimer’s Disease is the most common, but there are other types. Presentation of symptoms & speed of progression vary.
Early stages often show as problems with memory or mood. Some may have delusions, hallucinations, paranoia.
Later stages can show in many areas of the mind or body. Loss of balance & continence are common. There may be eyesight, perception & taste changes.
Lastly, speech, swallowing & walking ability are lost.
Teepa Snow is a world class expert. She has a care focus & has many online videos with great advice.
I hope you find information to help you adjust & find acceptance along this new part of your marriage journey.
You will have to face the reality that changes are happening and decide how to make sure your husband gets the care he needs. This means hiring help to come to your home or placing your husband in a care facility .
Not everyone is willing or capable of being a hands on caregiver that’s ok . However , you DID sign up to be his wife and do have the responsibility of making sure he gets the care he needs .
Even though you think you don't direct your anger at your husband, it's quite likely that how you feel will still be transmitted, however much you are trying to keep it inside.
It doesn't sound as if you are cut out to be a caregiver. Not everyone is, and that's okay. The important thing is to recognise your limitations and strengths, and then act accordingly.
My mum could beat me in quizzes and was able to work out puzzles - all things which require a certain level of cognitive competence. Yet, she couldn't make a cup of tea, or make herself eat, or always find the bathroom, or know her own age, and so on... She needed constant care.
Enjoy playing rummy with your husband, but arrange for his care that doesn't involve you.
And if your husband is like mine was if they see no point to doing what they want them to do then why do it?
Is there an Adult Day Program near you that you can get him into? this will do a few things. Keep him more active and give you a break so that you can do what you need to do.
If he says he does not want to go you could tell him that "they need your help with________" and tell him it is something that he liked to do or did for a job. Or "there are people there that need help maybe you can help them out"
there is a fine line between wanting him to get stronger so that he is mobile but is he then more of a fall risk leading to an even more catastrophic result.
Now might be the time that you begin to think about the "What If's"
Will you have to place him in Memory Care so you can continue your work?
Will you hire caregivers so that he can remain at home and you can still work?
I always said I would have to place my Husband if it became a matter of safety.
If it was no longer safe for HIM for me to care for him at home OR if it was n o longer safe for ME.
Safety is not just physical but also emotional, mental.
Placing someone is never easy. It is the realization that you can no longer manage their care at home.
Look, caregiving is hard and it takes 3 adults to caregive for one person.
You will keep your husband home as long as you can but I will tell you it’s inevitable that he will end up either at home with 24 hour care or you will find a nice facility where he can get the care he needs.
Caregiving is soul sucking. No one wants to put their LO in a home, but at some point— especially with Alzheimer’s/dementia it becomes inevitable.
You will need to come to terms with the reality that his situation will only get worse and yes it will affect your own life in many ways. There is only one person who can take care of you. That is you. That’s because you are competent and must make your own decisions.
And while it is admirable that you don’t direct your anger at your husband, it is harming you and indirectly him. Please see a talk therapist to help you with this devastating situation. This will help you focus on decisions for the both of you.
On Refusing to cooperate with PT. My DH aunt was a very active and agreeable person prior to dementia. She had therapy for years before becoming bed-bound. Actually she even had PT and OT after that. One day long before she lost mobility a therapist (after a friendly therapy session) asked her to walk across the room from where he was standing with her to a chair, so he could observe her gait. She wouldn’t/couldn’t do it? He was trying to ask her in different ways to gain her compliance and I walked over near the chair and pretended to see something on the floor.”Oh Auntie”, I said in an excited voice. “What is this?”
She hurriedly walked over to where I stood.
Years later in the NH bed, on a zoom call with her Geriatric Primary (who aunt really liked) she couldn’t move her leg in bed when asked. When her long time CNA came in and asked her to come with her for her shower, she got out of bed with help and stood and pivoted to get in the shower wheel chair. So it seemed she could move her leg if she didn’t have to think about it.
In your husband’s case when he refuses therapy, I would stop for that day, although sometimes all it takes is a few minutes chat about a ball game or an ice cream break and he might pick up with the therapy as if he hadn't just refused. My own dad, without dementia, went from refusing therapy to having his buddy come over and meet his therapist and lived many more active years.
Not all therapist are knowledgeable about dementia. Some just want to do their job in a straightforward manner and move on.
If your DH isn’t on an antidepressant, please look into this. It is helpful for many and actually might help you both.
And I would advise a certified elder attorney to provide guidance on how to protect your income and savings as DH health continues to decline. It brings great peace of mind.
I strongly suggest you start learning about Medicaid, what it covers and how to qualify for it (and what it means for the "community spouse"). Contact a Medicaid Planner for your home state. Also, make sure your legal ducks are in a row: hopefully you are your husband's PoA and he has a Advance Healthcare Directive completed, along with a DNR and other "no intervention" lists.
So the fact that he doesn't seem to want to cooperate with PT is more than likely that his brain won't allow him to as it is too confusing for him.
It is NOT his fault, and your anger is misplaced. You should not be angry at your husband as he can't help it, but instead at the disease that is taking the man you married away.
Hopefully you both have discussed in the past what should happen should one of you become too much to handle for the other, but if you haven't then you just have to do what is best for the both of you.
You do not have to be his caregiver if you don't want to, as not everyone is cut out to do that. Only you can decide what you can handle and what you cannot.
Your husband though should still be your number one priority regardless of what you decide to do about his care, whether you hire full-time in-home help or have him placed in the appropriate facility, as you are his wife first and a "professional" second.
He says he is happy with his life and hopes he lives many more years. This is a horror for me. I didn't sign up for this. I disagree with what you write. I am a professional first and his wife second. My anger is understandable and natural, but I do not take it out on him, at all.