There is a memory care facility that will be opening in December of this year. It is less than 5 miles from our home. I arranged for a meeting with a representative, and Jim's brother graciously stayed with Jim while I went to my meeting. It's always good to get information and know what your options are.
It's going to be a lovely place. They are guided by the principles of Teepa Snow. Teepa is a dementia educator, and her philosophy is based on positive approaches. The facility rate is based on single versus double room, and level of care. If the person is a diabetic, or if a person is incontinent, this puts them in the higher level of care. It is very expensive, at $92,000 a year for someone with Jim's level of care. While I say it is expensive, I must also acknowledge that there are nursing homes in the area that charge north of $100,000 a year.
The representative was very knowledgeable and informative. She was thoughtful, caring, and I could tell that she really has a heart for the elderly and for those with dementia. She also provided me with a contact for some home care that sounds like it might be a good match for our needs. I've called twice this week; still waiting to hear back from this contact.
One of the limitations of home care agencies that I have found frustrating is the minimum number of hours per week. Usually it is something like 24 hours a week. That just would not work for us, at least not at this point. I'm looking for some help that would be just a few hours a week. Jim would need a gradual approach to someone else being here to help provide care.
In the meantime, a very dear friend of mine has connected me with her sister-in-law, Kathy. Apparently Kathy has done home care privately for a number of years, working with folks with dementia. I spoke to Kathy by phone and I was quite impressed. She is a polite, soft-spoken woman with a real heart for those with dementia. She has some family travel planned over the next few weeks, but when she returns to the area in mid-October, we'll give it a try and see how it goes. I'm hopeful!
At this point, the hardest part (for both of us!) is the psychotic component to his Alzheimer's. As time passes, it seems like he spends more of each day further out of touch with reality. His hallucinations are so very real to him. It is so strange to have these bizarre conversations throughout the day which just make no cognitive sense. At times I feel like I'm losing my mind! This afternoon we were watching a documentary about China wildlife. The following is just one example of several confusing conversations we had.
Jim: "It's the five and way it was. Do you think so?"
Me: "I think you're right about that."
Jim: "He walks the plant too loose. Did he tell you that?"
Me: "I'm not sure what he said..."
Jim: "What do I have to do about it?"
Me: "From what I know, everything is all set, so we don't need to do anything. We can just relax."
Jim has taken to rummaging. Our home is not cluttered, fortunately. But he does manage to find drawers to go through, my purse, take things out, put them other places etc. He clearly is having difficulty figuring out where things go. I have found banana peels in bathroom trash, in the fridge and in the kitchen cupboard. A huge wad of clean tissues were in the dryer, articles of clothing in different parts of the house....I've decided to not let it bother me. I can't possibly follow him around and monitor his every move, every minute of the day.
We were at Wegmans last week and ran into one of our neighbors. We haven't seen her in a long time, and I wasn't sure if she knew about Jim's dementia.
Neighbor: "I haven't seen you in a while, and I was wondering how you are doing?"
Jim: "Just looking for a Saudi."
She gave me a knowing look, squeezed my hand and said "So good to see you. Be sure to call if you need something."
What must it be like inside his brain? I'm only hearing bits and pieces, but it must be so hard for him to have these crazy thoughts running through his brain all the time.
Living in an altered sense of reality. Another curse of dementia.
Thank you dear readers for stopping by. I appreciate each one of you. As always, my heart is lighter as I finish typing this post. Thanks for listening.
26 comments:
I've been thinking about you, wondering how things were going. I'm saddened by the speed at which Jim's dementia is progressing. I wasn't expecting that. Not yet.
The costs of memory care seem to be exhorbinate. I know the value of things has really gone out of sight, but, really? I remember our neighbor, they had family care for him on shifts and they were paid the going rate - they ended up having to put him in a home. After he passed, she had to go into a home and basically died penniless. The neighbors had seemed as if they had all their ducks in a row, stocks, savings, retirement, insurance, and social security - just to die broke. I wonder if people should save more or if it really isn't going to matter. Sigh ...
Hang in there. I'm glad you let us know how you were. Take care. Hugs.
I had head of the speed dementia moves. It must be very difficult to keep up with that progress.
Although I don't have dementia, I am getting older and less able. I keep hearing about the cost of caring so have decided they can have the house if anything happens to me. My son is settled so it won't affect him. The powers that be would take the house anyway if there wasn't enough money to pay for my care.
Hi Sharon. Apparently dementia that has a psychotic component (about 50%) progresses at a faster rate. It still is shocking to me, and I don't know if I will ever really wrap my brain around it. The reality of the fast decline is most apparent when I think of friends/family that we haven't seen in a year. The comparison of then, versus now is overwhelming to me.
The cost (both financial and emotional) for dementia care is astronomical. As we baby boomers age, this will become even more apparent. I don't know what the answer is to this growing national, world-wide issue. I'm relatively young at 65. I don't know if I would have the ability to keep up with everything if I were in my 80's.
Thanks for thinking of me Sharon. Sending hugs right back to you.
Hi Valerie. Yes, there is always the value of the house that can be used to pay for long term care. Some folks take out a loan against the value of the house. Others may opt for a reverse mortgage. Some folks have Long Term Care insurance to help pay for some of these costs. We made the decision long ago not to opt for that option; the LTC industry has had problems with raising premiums to the point where they are unaffordable, thus leaving the person forced to opt out, losing the money they had invested. Years ago there were stories of LTC insurance companies going out of business, and thereby leaving the investors high and dry. I'm not sure if this industry is in better shape now or not, but for me it is a moot point.
I have a meeting later this week with our trusted financial planner. I'm looking to him for some guidance. I realize that I have to make sure I am able to care for myself as well, once Jim is gone.
Thanks for your comment Valerie. The kindness of you, Sharon and all the other readers means a lot to me.
I am so impressed by your strength in all this. I just can't imagine how hard this must be. I don't know which is worse. To have dementia and lose your very essence but still have a working body or have a debilitating stroke and have your mind in a body that no longer works. I almost think, for me personally, the ignorance of dementia would be better than being literally trapped in a useless body. Either one is truly awful. My heart goes out to you.
I have another blogging friend whose husband has dementia. He doesn't seem to have the psychotic component, but she cannot go anywhere without him. I know she is appalled at the costs involved in care for him and so unless she's willing to lose her home, she takes care of him herself. And then I read about your struggles and what you (and Jim) are going through. I'm glad you are able to look at options for his care so you can also take care of yourself. Other countries have much better help for their citizens when they get into this situation. America used to lead the world in so many ways that they just don't any more. I am always happy to see there's a post from you and to learn how you are coping. If you lived close by, I'd love to be one of the people you could lean on. So I have to offer just my words instead. And my concern and care. Thanks for taking the time to write. It helps me, too.
Hi Mary. Interesting comparison, and I would have to agree with you. I'd rather have the ignorance of a dying brain rather than an intact brain with a body that doesn't work. And as you point out, neither choice is a good one.
I don't always feel strong, but I find that by controlling what I am able to control, this leaves me feeling stronger. For example, I can't control the rummaging or the psychotic breaks with reality, but I can control my response to them, and do the best I can to respond in a calm, loving manner. This truly is what gets me through this. Let go of what I can't control, but do the best I can in other areas.
Thanks Mary for your kind words.
Hi DJan. Oh my gosh, I would love to have you as a neighbor! Your passion for hiking is so close to my heart, and some day I hope to be able to return to the great outdoors and engage my body in a challenging and physical way. Exercise always was a great joy for me, feeding my brain and my body. Someday I will return to this, but for now, greater needs prevail.
There is a model that is used with developmentally disabled folks, where they live in a community that is fully integrated with typical folks, and the typical folks outnumber those with disability. It is a loving, caring environment, and I think would work with dementia. The key being that those who are disabled are outnumbered by those who are not.
Thanks for your kind words DJan!
My jaw dropped when I read the price of care. Good grief, that is absurd. I think you have found a good option with your friend's SIL. We had such an arrangement for my step mom and it gave everyone a chance to catch their breath, plus Liz was comfortable with her. Sure hope it works out for you. I too wonder about the limited options of aging. My grandmother was sharp as a tack but was locked into a body that couldn't move without pain, ears that barely heard and eyes that no longer could see. You are right, none of the options are good.
Stay as strong as you have been and I do so hope help arrives in Oct. Still praying for you both.
The price of care is horrifying. Both of my parents were in long term nursing care at a cost of $40,000 a month. It is insane.
Hi Patti. Yes, the cost is just shocking. Sounds like your stepmother had some good help. The key of course, is to find a good match personality wise. I guess I would assume that if you seek to do this kind of care, you must have a heart for it.
When I talked to Kathy, she shared with me that she became very attached to the last woman she cared for. She died this past spring, at the ripe old age of 92. Kathy said she had to take a break from caregiving for a few months, she was so heartbroken at the loss. This touched me, and makes me think that she may be a real good fit for our situation.
Thanks for your well wishes and your prayers Patti. It means a lot to me.
Hi Roberta. Wow! Just Wow! $40,000/month!!! It's just not right. How does anyone expect that folks can manage these kind of expenses. The spend down with medicaid is a legal option, but that becomes complicated too, with NH getting picky about who they will accept.
No good answers, but I see a long term care crisis headed our way in this country. thanks for your comment Roberta.
Dear Carole, I am so sorry that Jim is deteriorating at this rather speedy rate. I am sure you know that everything he says makes perfect sense to him? The sufferer tends to swap words. My husband once saw his hospital ward as a parking bay where the beds were the cars and people kept getting in and out of them. Only afterwards I realised that he had used a perfect analogy.
Now he’s gone - his condition moved downwards at a tremendous rate, he didn’t last more than 8 months - I am very sad and sometimes I wish he were still around. But only sometimes. If I’m honest I am glad that we were both spared a long-drawn out process. You seem very strong to me. Good luck.
Hi Friko. I followed your journey on your blog. It was just heartbreaking. And I'm sure the wounds are still pretty fresh. You know only too well the sorrow of this dreadful brain disease.
Yes, Jim swaps words at times, and you are right, it seems to make perfect sense to him. His world must be a scary place at times. I try hard to keep him content and do my best to soothe him when he is upset. The doctor has been good, and I know I need to contact her when Jim's hallucinations are just too disturbing for him to handle. No cure, no real fix of course.
I understand perfectly the desire to be spared a long drawn out process and yet at the same time, not wanting to let go and lose your beloved.
Hang in there Friko. I know you are looking to have a semblance of a balanced life again. Thanks so much for stopping by, and do take good care.
Like DJan, I too would want to live closer so I could possibly help in some way. I took Hospice care training and one of the questions in the preparatory class was, "If you were going to die, what's the worst way you can think of?" My answer was to be trapped in a body with a mind that still worked, but I couldn't communicate. I feel for Jim and you... As others have posted, I keep you in my prayers and hope you get some help with Jim's care. To see him deteriorate so quickly is heart-rending...
Hi Carol. I'm so touched by your kindness. I'd love to have you as a neighbor:-) I truly feel touched by all the kind readers who provide me with such wonderful support.
Hospice care is such a wonderful service. I've always believed that it takes a very special person to be able to provide that kind of support at the end of someone's life. I admire you for having gone through the training.
Thanks for your thoughts and your prayers. I feel like I have some hope, now that Jim's brother is willing to be involved. And the possibility of Kathy providing me with some respite...well, I shouldn't get my hopes up too high, but I have a good feeling about this.
All I can say is you are an amazingly brave woman to handle this. I know you love Jim and want the best for him but it must be very shocking to go thru. I'm the same age as you and i'm not sure what I would do. Even thought the cost is astronomical, it may be a wise move in the end if he really isn't able to function in your house anymore. i truly am moved by what you write since we are ( my husband and I ) are the same age as you and Jim.
Hi Christina. Yes, unfortunately Jim was at a relatively young age when he first developed signs of dementia. Typically you think of folks in their late 70's or 80's. The diagnosis was shocking, and some days it still seems shocking to me. We were watching a travel show this afternoon, and it occurred to me that we will never travel together again. It was one of the things we looked forward to in retirement.
But I'm fortunate that we have had a really good marriage. We've managed to create a lot of wonderful memories along the way. I can't imagine how hard it would be to provide care for your spouse if you didn't really have a good relationship to begin with.
As far as care for Jim as it progresses, I guess I have to be open to all options. Thanks for your kind comment Christina.
You need a break from all of this. Good luck finding someone you can trust.
Hi Gigi. Yes, I am hopeful that help is in the wings. You are right, that finding someone that we can trust is very important. Hope you are feeling better!
Mostly quite familiar. Barbs grasp of reality slips at times mostly affecting judgment. We spend a lot of time looking for "lost" items also. Also paranoia is so frustrating creating a personality change with "hateful" people all around. I've given up on that one...
Hang in there and best wishes.
Ray (Troutbirder)
Hi Ray. The loss of good judgement is a challenging one. Especially when you want to be sensitive to the person's feelings, and at the same time protect from bad decisions. I didn't realize your wife was so far along in her dementia journey. I'm so sorry to hear that, and empathize with what you are going through.
Since Jim has been on the Seroquel, he has been less upset with the paranoia, hallucinations and delusions. The Seroquel doesn't completely take them away, but it helps with Jim's response to them.
We've a tough road ahead of us Ray. Somehow it seems a little better knowing that there are others out there traveling the same road; we can commiserate and support each other, and I'm so grateful for that.
Thanks for your comment Ray. Always good to hear from you.
Carole, I am glad to hear that you are looking into support options for the future, and that Kathy may be able to assist for a few hours a week starting next month. In your present situation, you just aren't getting a break from providing care, and that must be so difficult. I am really shocked at the high cost of care homes!
I have a past colleague/friend who who is in the other situation: intact mind trapped in a deteriorating body. It is a rare variant of ALS. He continued working as long as possible, from his wheelchair, using a computer to communicate. But now it is so advanced that even selecting the "like" button on Facebook is often too hard. Aging can be such a cruel process.
Jude
ALS is such a terrible disease. I'm so sorry to hear of your friend suffering from this.
It looks like I have another helper that will be coming my way soon, in addition to Kathy. I'll be writing more about it in a future post. It really does give me hope.
Thanks for your comment Jude.
So happy to learn that you'll have help soon. This is all so very difficult. Blessings to you -- I missed seeing your Sunday post so am writing another comment to your last post. Hope all is well for you and Jim.
Hi Carol. Thanks for stopping by; always good to hear from you! We are doing well. Looking forward to getting the flu vaccine later this week. We definitely don't need the flu! Take care Carol.
Post a Comment