I am an 88 y/o retired Internist with cardiology training. My life Partner is an 84 y/o retired nurse . We live in a house and love it because of privacy and the wild life surrounding us. We live on 17 acres bordering a 35,000 acre state forest. I am cognitively intact with physical co-morbidities ( cardiac and spinal stenosis). No CHF but 5 vessel off pump CABG 22 years ago; second degree heart block with 100% pacemaker dependency ; TAVR ; 2 ablations for AF and cardiac MRI showing EF 51%. Also spinal issues with stenosis and disc displacements at multiple lumbar levels . My life partner has developed fluro PET scan proven amyloid Alzheimer's with a centiloid count of 129 and ptau -217 blood levels of 1.5 - all very high. We have completed 7 doses of Kisunla. Her memory has deteriorated significantly over the past year. MMSE is 24/30 but in every day living it appears worse. I am her care giver . She has 2 children . The daughter lives 2 hours away and has a facility picked out for her near her in southern Connecticut. It is a fancy place going from IL thru memory care but quite expensive. My partner has toured it but she cannot remember what she saw. I value my privacy and have no intention of moving to a place where I would have to switch my providers, banking, etc. etc, And have no family nearby. My family - an ex living out of the country , widowed from her second marriage the mother of my two daughters . One daughter nearby deceased from a horrible cancer 8 years ago and a living daughter with family and my great grandkids 3K miles away in Oregon. My intention: stay here in my house as long as possible doing caregiving. (I do her banking, food shopping with pre cooked meals from Cookunity helping a lot, transporting both of us to medical appointments, portal set up and medication control, etc.) At some point, she will no longer recognize me and probably become a danger with leaving the stove on or wandering or I will burn out taking care of her. At that time, I shall let her daughter, who has health care proxy and her son who has financial POA, take over and place her in a memory care facility. I am touring one about an hour from me and two hours from her daughter. It is a pure memory care without the IL wait list and shifting step ups. I shall then sell the house which is in my name and move to a senior facility near my daughter in Oregon. Anyway, that is my plan unless anyone can suggest something different. I love my partner but when she no longer recognizes me, the relationship changes. Presently she loves living here, dabbles in the garden, loves swimming in the pool which I have recently opened for the season (we live in the tristate area NY/NJ/PA), She does the laundry, makes the bed and can take care of her own toileting. She does not want to drive long distances by herself and was recently picked up by a family member to attend a college graduation for a grandaughter about w hours away. She had to be driven back early because the crowd and confusion was too much for, Pictures were taken of her with all her grandchildren including the graduate but she cannot remember the occasion or drove her up or brought her home. It was her grandson. She feels secure with me and from what I have learned about romance/ intimacy in the brain of the AD, there is still a connection but the ability to express it differs. Makes it hard for me, the spousal caregiver to grasp emotionally. But I put on my doctor's hat and accept her condition as part of the AD brain and cannot take it personally. She means well underneath it all. We need each other during this time. I am selfish and simply do not want to give up the privacy and independence of where and how I live and switch to an apartment in a building with strangers in dinning rooms with strangers. Yes, in Oregon possibly but there I have nearby a daughter and her husband, 3 grandchildren and their spouses and three great grandchildren. Any comments?
You both sound like you are doing amazingly well given your medical histories.
If you don’t have in home help, housecleaner, perhaps a regular driver, errand runner, hygiene helper when the time comes, the moves might happen earlier than hoped for and one must pivot.
That might be okay for and with both of you. As was mentioned it will make dealing with strangers easier for her in her future and perhaps you as well to accept help sooner rather than later.
You will of course lose some privacy by having help and help must be managed but it can extend a preferred life style when embraced.
i try to have ladies over for tea and conversation . Her grandkids love her and when they have time they drop by.
We miss our Berner who was a family member but had sarcoma , partial torsion and arthritis . The vet suggested euthanasia sadly .So no hairballs and dog dander making dusting easier .
I do hope and pray that you are smart enough at this point to not let her drive at all, even for short distances, as that certainly is not fair to all the innocent drivers on the roadway who are unaware that an older woman with an impaired brain is on the roadway with them too.
I know you would feel terrible if she were to kill or severely injure some innocent folks because you allowed her to get behind the wheel of her car with her broken brain.
Someone driving with any of the dementias is NO different than someone driving high on drugs or drunk. She must be stopped TODAY!
And as you're learning, your "partner" does not do well when her daily routine is disrupted as proven when her family tried to take her to her grandsons graduation. Those outings too should stop. People with dementia do much better when they stay in their familiar surroundings doing pretty much the same routine day in and day out.
Now if you're wanting you and her to stay in your house for as long as possible, then I too suggest that you start hiring some in-home help for the 2 of you. That way you can both enjoy the house and property that you both love for as long as possible, and your partner can get used to having other folks coming in and out.
You will know when it's time to have her placed in the appropriate facility and at that point it will be a memory care facility that she will need, so until then just try and enjoy whatever time you may have left together under the same roof.
God bless you both.
Removing her feeling of independence will cause her more harm at this stage . She used to drive 40 minutes to her club yo play paddle or tennis with her 80-90 year old friends . I followed her on GPS. We have stopped club membership and those drives no longer exist. She does not drive alone and from what I see has excellent visual orientation and quick reflexes . The major problem is memory and what turns to take .
With me in the passenger seat I see to it that is nor a problem.
As a nurse, at this stage of her dementia she understands her limitations and I do not want to take that aeay from her.
The forceful replies about the driving are from those who have had either personal experiences or read about them. I understand and appreciate your concern.
A close family friend had an accident similar to Geaton's. Senior clinical psychologist with dementia who should have known better drove his wife "just a short way", ploughed into a tree. It took her 3 agonizing months for her to succumb to her injuries
Let someone else break the news to her, please
(((Hugs)))
When to transition your spouse to other care? When either she is no longer safe in your home or you are overwhelmed/burnt out as her caregiver. That's the agreement I have with my Mom who lives next door to me.
Have you watched the movie "Still Alice"? She had a plan, too, but cognitive impairment doesn't care about your plan. If you started to develop dementia you may become forgetful, but also maybe resistant to change, depressed, paranoid. You may have anosognosia so you don't go to your doctor and you resist others' attempts to help you. I've just described one of the most common scenarios that is posted on this forum.
Is your daughter your PoA? I hope it's durable for her sake. Do you know that the PoA is under no obligation to provide the hands-on care? Are you ok with her hiring aids to come in to your apartment to do that? Or, maybe she won't want to do all that managent and will transition you into a facility. Maybe you should scout one out in advance and spare her the stress of having to do that. Just in case it's where you end up. Don't burn out your daughter as she orbits around you because of your self-centric plan. She has a life, too. Even though you've put an admirable amount of thought into a strategy, no one ever likes to think that instead of falling and breaking a hip, they develop dementia. And then break their hip. My point is that you just cannot factor in for all the variables. Age-related decline loves to throw curveballs. So maybe downsizing sooner rather than later is the best plan.
Ideally, the time to transition the both of you into a higher/different level of care is before you think you need it.
The dementia movie I remember is a Canadian piece called “Away From Her”
w Julie Christie Gordon Pinset and Olympia Dukaki
From your comments on what I wrote I wonder about your own comprehension .
I have no sympathy because my 49-year-old brother-in-law was killed by an impaired driver who had cognitive issues and was also drinking. (I'm sure he meant well, though. Too bad he lost an arm.) Driver ran a stop sign and plowed into BIL's vehicle. Somehow BIL's head was almost severed from his body. My sister was in the car too. She was only in the hospital for 4 days, broken ribs, cast on arm, internal injuries; as a doctor, you know how that can be. She was able to attend her husband's funeral, one that I'll never forget. The crying children, my sister pale and in pain, barely able to walk, and BIL's mom in the pew behind me sobbing her heart out at losing her beloved son. The accident left my sister a 35-year-old widow with four now fatherless children. She was embroiled in lawsuits about the accident for years. Eventually she did get some money as a result, thank goodness.
You said you're selfish. Are you THAT selfish?
Geaton777s post to you is 100% coherent and spot on. Perhaps you should wonder about your own comprehension skills. The Best piece of advice you've been given here is this:
"Ideally, the time to transition the both of you into a higher/different level of care is before you think you need it."
Dementia comes on like a frog swimming around in a pot of hot water. He doesn't notice how hot the water is getting until it's boiling and it's too late to save him.
A couple of things: Lots of plans for her--What's the plan if you drop while out on your property? She sounds like she's mid-stage at this point. She may not be able to rescue you. A person with a tenuous short term memory may not be able to realise you've gone missing. They'll also have a hard time juggling the sequencing of steps to activate EMS or other help.
I'll echo the chorus. Allowing a person with a dementia diagnosis to operate a motor vehicle because you want them to retain their sense of autonomy is unwise. Your wife lacks the capacity to make an informed decision. The losses can occur suddenly and out of the blue, so having her behind the wheel isn't a good place to 'wait and see'. Am having a hard time wrapping my head around a physician, who no doubt has seen some crazy things in their career, being so nonchalant. I can hear the conversation in the ED now: "Oh yeah, guess what came through yesterday? Ol' Doc XYZ lets the Mrs drive with her Alzheimer's, and she sideswiped a kid". If she has a diagnosis on her chart, then a good accident lawyer will be able to take you both to the cleaners. You have to be the decision maker for her because she lacks the capacity to assess her abilities.
Your alternative to residential placement would be to have appropriately trained home health care help come into your home for increasing amounts of time as your partner's or your own needs increased.
Your home and location sound lovely and I can undertstand why you would like to stay in place. Home Health aides coming into your home might not be your first choice, but I think you might tolerate and appreciate them more as time goes on. If I had the financial resources to do so, I would probably try to stay in place myself.
Now the down side. It is a MAJOR adjustment to Community living. It can be done. You don’t have to do anything you don’t want to do. I’m an extroverted retired RN with a Masters in Adult Health Nursing. I’ve chaired our Residents Health Services committee, acted in our plays, twirled my baton at our pep rally etc. It can be a bit of a challenge to find like-minded people especially if you come from another state. But they are here.
It’s been proven that patients with dementia do better if they have a regular routine. Your S.O (Significant Other) sounds like she would benefit immensely from Assisted Living after a few weeks of adjusting. Yes, you will miss her but you’ll miss her as she worsens or dies. Your own health is telling you to consider a CCRC yourself. You may have several good years but don’t you want to pick a place before you NEED it? Maybe you could have her placed and visit frequently for a few months then you could find a place for yourself. OR, both move into a CCRC and have a smooth adjustment. Do not rely or burden your family…they have life demands unknown to you. This is a difficult time for you and I hope you find a path that meets both of your needs.
As for the driving, my mother was not willing to stop driving. She would get lost and call me (I lived two states away) and I’d have to use maps to figure out where she was then talk her through the trip home. Her ability to read signs was getting worse and she never had good night vision. I ended up getting a tracker for her car after she found herself somewhere with no buildings of any type and no cross roads at night in a heavily wooded area. About then I hired daily in home care for her. I asked them if they would run errands and drive her places. It turned out that she liked being chauffeured and she stopped driving on her own! She still thinks she can and offers to drive to see me rather than have me come to her memory care, or she wants to drive to places herself if I’m busy. I can now just point out that she doesn’t have a car anymore and after that she forgets that she wanted to go somewhere. Giving up driving has been a lot easier for her than I ever expected! I thought I knew how she felt and I had prepared myself for a fight that never came. You can’t make assumptions on how someone will respond. I also expected her to resist moving to memory care. She still thinks of it as temporary at times and insists that she is moving back to Alaska, which is where she was happiest. We are on the east coast and the facility she is in is only two towns away from me. I plan activities for us to do together and I just point out that if she left tomorrow then she would miss out on x, y and z.
Planning ahead is wise but plans don’t always go the way we expect them to go. Your partner may adapt far better to the changes than you think, including giving up driving! As for where we end up living, we all need to be flexible and make the most of what comes, even if it isn’t what we wanted.