Planning potential future of spouse with newly diagnosed alzheimer's. Any advice?

I did not realize what was going on with my Daddy until about a year after the first time I had a very hard conversation with him about who was at his wedding. Fast forward... I watch a movie about Glen Campbell - titled "I'll Be Me". What an eye opener! I saw in this movie what was going on with my Daddy. I found this website and Alz.org. Open your mind and ask your questions. No question is stupid. Thinking outside the box is your best bet... One example: a friend of a friend had a spouse who watered her plants everyday and they died he replaced and replace finally someone suggested plastic flowers in the pots and bam... no more dead plants.

My Mom went through this for 2 years. Be prepared for an extremely challenging process. It’s like taking care of a baby, only 20 times the size. Don’t take his anger personally, if it happens. If he remains at home, you will have to eventually assist him with everything. He will forget about:
1. taking showers and how to wash himself.
2. eating (eventually). You will have to hand feed him. He will not always eat and may spit it in your face. My Pop would put his false teeth in his food to eat for him.
3. taking medication correctly (you should keep it locked up and administer it yourself)
4. dressing for the weather or at all.
5. driving (I would take that away now). If he gives you a hard time, tell his doctor to report him to dmv. Have a psychiatrist do it.
6. where he put things. He will blame everyone for stealing. He will blame everyone for everything.
7. what time it is and wander around at night imagining people are in the house. Those people will start coming during the day as well. The Alzheimer’s Association can send door alarms so you will know when he tries to leave the house. If you sleep in a separate room, he will come in your room all night and disturb your sleep.
8. how to control his emotions and have crying or anger episodes/volatile emotions. It could get so bad you might have to call the police. He may try to hurt family members. Remove all ammunition from the house. Give it to the police.
9. how to go to the bathroom and where it is. He may urinate anywhere. He will have Incontinence problems. You will have to change, wash him below and put on a protective cream. Plan on five times a day. The days of diarrhea will be the worst
10. what he really sees. He will see and imagine lots of things.
11. where his things are. He will bring items from everywhere and put it in the house or bedroom.
12. how to walk. You will have to call 911 often to pick him up off the floor or ground. If he’s really hurt and breaks something, the hospital will treat him and then move into a rehab facility. Most insurances cover up to three months of rehabilitation. This may be the only break you get if he remains living at home.
13. how to have conversation. He will lose his words.
14. short-term memory and eventually long-term memory.

Hospice may have to come in at the end. They help with end of life. Call them for help. Every Hospice has slightly different ways of approving their involvement. You may have to have the hospital start that process.

You will always be adjusting his medications to help memory, sleeping, anxiety, depression, and any existing health issues-which means many doctors appointments. Sundown Syndrome-The unusual behavior will start around 7pm and then eventually get earlier and earlier. I would recommend looking at memory care facilities now and how you will pay for them. If you have savings, expect to pay 8-10 thousand a month for a nursing facility. Or, pay someone part-time to come in and help you. It’s about 30 dollars an hour. Educate yourself on Alzheimer’s. Get as much help as possible. Contact your local Social Services, the Alzheimer’s Association, and local Aging Councils for advice. If you are on Medicaid, getting placed in a facility might be easier. It also might be further away from home. You have to be very low income for Medicaid approval. Do everything to prevent getting burned out from taking care of him. The degree of how the disease progresses is different for everyone, but the ending phase is the same. Remember, he doesn’t know what he is doing, or remember what he has done. I wish you success with this process. It’s a horrible disease and very draining emotionally and physically.

I started to panic, too, when I first heard my husband's diagnosis; thought we were falling off a cliff in slow motion. I came to this forum looking for some fast answers and solutions: I got neither, but I finally exhaled and realized that I had a lot to learn and I that had to navigate without clarity or exact answers. I learned that selling our home will provide the care he'll need, but there is no time table for his symptoms and we won't know what to do until those symptoms present themselves. Our neurologist offers no help and no hope; soon we'll be looking for a Geriatric MD who has expertise along with a Geriatric Psychiatrist if his agitation becomes abusive: it's all dependent on, "when" things get worse. There are no early interventions or cures, so this is a long haul process. P.S. we consulted with his family doctor about medications that affect memory and we have taken him off those so that he can stay clear and keep driving his beloved F-150 for as long as possible.

There are drugs out there that will slow it done like Namzaric my BIL has been on it now for about 5 yrs it has slowed the progression down.

Has your husband or you been in the military? If so look for places that will take the military. I found this out when I was looking for a memory place for my BIL because I am a veteran and I found out that places will take me and my husband as well.

It all depends on what you have for health insurance if you have long term care insurance. They are expensive between $5000 and higher a month. Start looking for places. Start with an elder finance attorney then look into medicaid what your state allows.

Prayers

Hold on! You have no idea how fast this will progress. I recommend you contact your local chapter of the Alzheimer’s society with your questions and to get support. Look ant their website. You could also look into a clinical trial of a medication that delays Alzheimer’s progression. Some people live as long as 20 years depending on their general health and age. In the meantime have a consultation with a good elder care lawyer who might advise you to get an irrevocable trust or to spend down so that your husband would be Medicaid eligible when the time come for a facility. You might want to make sure all your documents (will, power of attorney, health care proxy) are in order. My husband was diagnosed 4 years ago and aside for very annoying forgetfulness, he is pretty functional which is why I say hold on!

Based on what close friends have gone through, my first suggestion is to connect with an elder attorney to discuss things on how to proceed. $400 now is a bargain compared to $450,000 later.

Nearly 35 years ago, my 87 yo neighbor (let's call her Linda) separated (on friendly terms) from her husband. They remained in contact over the years, each living their own life, but didn't legally divorce. In fact, he got involved in another relationship. 7 years ago, he was diagnosed with Alzheimer's. In order to protect Linda's assets that she has (that she earned on her own - her own house free and clear, her own retirement savings and pensions, her own investments), the elder attorney highly recommended that Linda legally divorce her husband so that none of Linda's hard earned assets would have to be diminished or used entirely to provide her husband's memory care (husband had his own pension, home, etc). Which advice Linda took and did. She helped with his care by being supportive of him and his then long time girlfriend (who did care for him deeply).
Linda's husband lingered for 4 years and ultimately passed away in the memory care facility he was in.

Depending where you live, the cost of memory care varies. In the greater PNW, better/higher quality facilities run about $10-15,000 a month (plus the 'extra' costs).

A well-versed, experienced in Medicaid attorney can help you make the necessary plans and moves to make sure your husband can qualify for Medicaid down the road.

My husband and I have an agreement in place that if one of us ever receives the Alzheimer's/Dementia diagnosis, that when it starts progressing that we will get divorced - not because we don't love each other but solely because of the financials - each of us, as individuals, will need the financial means to take care of ourselves in the future. Sad, isn't it, that this is how we have to think in today's world.

If there is any cognitive mind left get divorced immediately to sever your assets. Ultimately this event can bankrupt you before you are eligible for assistance then what are you going to do when you need something. Most insurance does not cover this type of long term care. Plan on 5 to 7k per month for long term care. Been there still dealing with it

Memory care facilities are expensive, and so are caregivers that come to your home. My mother was in a continuing care facility where she started in independent living and then moved to memory care, and finally to skilled nursing, all on the same campus. Staff assisted with the moves. There was an upfront fee, and she also got their insurance policy, which keeps the monthly amount the same, no matter which unit she was in (there were annual cost of living increases). Normally people pay much more in the units that require more care, such as memory care or skilled nursing. Costs will vary, depending on where the facility is. If your husband is eligible for Medicaid, costs will be less, but there are other requirements. You may want to consult an attorney who specializes in elder law if you and your husband need to consider Medicaid, so that you can protect assets for yourself.

Here in California MC is not cheap and care is even more. I had my Daddy in a MC for a few months but it wasn't what I thought it was it was 20:1 ratio. Fast forward five months I found a group home that was a little farther away, the cost was 4500 per month included everything 8:3 ratio. The only time they ever called me was when he would not get in the bed. They put him on the phone with me, it was about 11 pm and he had gotten out of bed and wanted to be up and about, I told him that if he went to be I would bring him his favorite treat in the morning. Which I did but he did not want it. But I told him anything to calm him down and due to the ALZ it worked for me.
Prayers
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The cost of memory care varies wildly, depending on your location. In northeast MA, we pay $8600 per month ($600 is for special meds) for my mother's bedroom with a small sitting area. Bedroom/bath only is around $7000. This facility has only 50 residents and they offer memory care only.

My step-mother was in AL, 2 months ago we moved her into MC. She has had dementia for at least 8 years, she kind of lingered in one zone for years, then the window shade came down and quickly, so we moved her to MC.

AL cost us $5,000 per month, MC $6,500, where she was. We just moved her to another MC, with the incentives it is $4,900 a month. She has an income of $2,000 per month, so $2,900 per month comes out of her investments. There is another $400 a month for meds and such.

No the new place is not as high end as the other one, smaller, but nice. We had no choice as we needed to make certain that her money would stretch. She is 84, could live another 10 years.

I am sorry about your husband, however, I wouldn't panic, my husband had it, he didn't die from this disease, he died of cancer, never got bad enough to be placed in a home. Enjoy your todays, plan for your tomorrows but don't let this diagnosis destroy your todays.

Good for you, planning ahead. Research the best elder care lawyer around you and pay the couple hundred for a discussion and recommendation. This will be well worth the money. All the places mentioned here are good resources, your state and local elder care government departments, AARP, VA, etc. Visit some memory care and skilled nursing facilities in the area and chat with their people. Some will be helpful and informative. IF there are any support groups for Alzheimers in the area, join and gather lots of free information. It is a tough journey. Bless you.

MRI can show decrease in brain volume in areas associated with AD, but it isn't truly diagnostic unless the doctor has done serial MRIs. The rate of change is diagnostic. If it is changing slowly, he may have AD but you may still have good years ahead.

Please take the wonderful advice given to prepare for the future, but also take the time to enjoy the present. Make wonderful memories together and take pictures! You will both need this to look back on. Printed pictures will be easier than digital in the future for your husband because he will be able to look at them himself. Put captions with the pictures so he knows what and who he is looking at. You will also cherish this in the future, and be able to sit and share it with him in the years to come.

In the meantime keep him physically active as much as possible, and maintain his blood pressure and blood glucose at normal levels. We can't control AD but we can do as much as possible to stay healthy and not accelerate it. God bless you with everything you and your husband need to have as good of a life as possible.

Start today making plans. Begin by putting all your assets into your name only. My husband was diagnosis 9 years ago. I wish I had the financial knowledge to have done this. If so, he would qualify for Medicaid now. (They can look back 5 years.) He is now under the care of Hospice and if I were to put him in a nursing home the cost would be over $7,000 a month. It has been a long journey into darkness and this past year has been the worse. He has been in diapers since last July and now can barely move. He was an avid jogger and now can barely walk to the front door. This is a horrible disease and I wish you the best through this. Our life as we knew it is over. No more vacations, going out to eat, to the theatre or anywhere. He is basically home bound and so am I.

First thing to do is to consult an Elder Care Attorney and make sure that you have all the paperwork you need for yourself and for him, for property. Consider a Special Needs Trust just in case something happens to you this will ensure that he is taken care of.
Next start researching resources before you need them.
Is he a Veteran? If so the VA might be of help. Contact your local Veterans Assistance Commission. The service they provide is free. They can help determine if he qualifies for any benefits through the VA. It might be a little or it might be a LOT.
Contact your Area Agency on Aging. See if they can offer suggestions or help in any way.
The Alzheimer's Association has information as well. And they will have a list of their sponsored Support Groups.
A few things for yourself.
Learn how to ASK for help if you need it.
Learn how to accept help when it is offered.
(but do not expect help)
Hire caregivers that can help you.
If Adult Day care is available in your area seek it out.
When you think you are having a bad day just remember ... this is nothing compared to what it is going to be like. Be grateful for the good days.
If there are things you have always wanted to do, places you have wanted to go...GO! you never know when you will no longer be able to do so.
Do not promise that you never place him Memory Care. This promise may be impossible to keep. You can say honestly that you will keep him at home as long as it is safe for him for you to care for him. And as long as it is safe for you to care for him. IF you have to place him in Memory Care it will mean that his care is more than you can safely handle at home.
As he declines look in to Hospice. My Husband was on Hospice for almost 3 years. I would not have been able to do what I did if it were not for the support, education, encouragement that I got from my great Team. I got supplies I needed, equipment and help. Medicare provides this and Medicare also covers about 1 week of Respite each year. As long as there is a documented continued decline a person can remain on Hospice.
((hugs)) this is a long journey. It can bring joy as well as tears.

In the Denver metro area, mom was paying just under $7k a month for a private room in Memory Care Assisted Living. Her rent included everything but medication and incontinence supplies, and doctor co pays, of course, plus personal incidentals.

Your best bet is to call around to Memory Care Assisted Living facilities in your area to get quotes and tours set up, because what we pay is meaningless in the scheme of things. Prices vary tremendously and change all the time anyway. Suffice it to say MC living is costly, no matter where you live.

I'm sorry your hubby was diagnosed with AD. You may want to read an excellent 33 page booklet called Understanding the Dementia Experience by Jennifer Ghent Fuller available online as a download. It pertains to understanding Alzheimer's from the patient perspective and has lots of tips for the caregiver in it.

Another good book is Living in the Labyrinth by Diana Friel McGowin. A national bestseller autobiographical account of her journey with AD that began when she was 45.

Best of luck to both of you.

I am so sorry for your hasband's diagnosis.
I hope you will consider that this is something to take a day at a time.
You will now have so much you have to learn about the disease, about its progression.
I don't know your husband's attitude but my brother's, in early 80s, about his "probable early Lewy's Dementia" was that while he was sad to know what his future would hold should he have to go on living, he was glad to know about the changes he was experiencing, why the were occurring, and etc. He could talk long and long about what he was going through.
As to long term care you are jumping way ahead. What it costs today is not what it will cost when it is needed. As to memory care it is costly indeed but there are levels of it and with the aging population there will continue to be more levels and choices. For instance, now my brother is gone, his ex partner, also in care, is in a moderate level where his cottage IS locked, but where, because he can do the minimal of feeding self, dressing self, shower with chair and standby assist, is not so costly as memory care.
ALF is good for care in some areas with moderate dementia, while MC is needed for some. You can't guess at this.
Prices across the country, even across states varies hugely. In fact in my own State, in SoCal where my brother was, memory care was averaging right around 10,000 to 15,000 Mo. while in my own bay area a good memory care may start at 20,000. Best way to find this out is exploring facilities and finding out what the price range is. It includes basic minimum with levels of care costs.
You have right now to make certain that all paperwork is done and done well. That means first stop is not the MC facilities, but a good elder law attorney so that your POA can be done, a second appointed, for financial and for medical. And then visits to all the entities, such as banks, stock companies, what have you, adding you name to any bills, charge cards and removing hubby from doing any accounts he can't manage, but perhaps having a personal account while he can. In future, should care funds run low, then you will need this attorney to help you with division of assets so your husband can access medicaid, and your own care funds be protected.
So try not to do this all at once. Try to keep a diary as you go. Learn about being POA. If you do not already manage your finances, begin to learn and make files for everything so that you CAN when you need to.
Your question, with a new diagnosis, encompasses so many facits of life one hardly knows where to start. But hang in there, try to take it slow, speak with family while the two of you can do that. I wish you luck.