Does anyone whose loved one has dementia and placed them in a memory care facility feel that they waited "too long" and why? - AgingCare.com

Does anyone whose loved one has dementia and placed them in a memory care facility feel that they waited "too long" and why?

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My husband's neurologist warns me against waiting until he has lost most or all of his short term memory, a stage which he is fast approaching. He has early onset Alzheimer's disease so we are both fairly young and I have no problem taking care of him. Putting him in a memory care facility will be the most difficult thing I will ever have to do.

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Thank you all for taking the time to write such thoughtful, informative answers. To give you a clearer picture of my situation, my husband is 69 and was diagnosed with "Alzheimer's type" dementia at age 64. I had first suspected dementia when he was 58. I am 66. My husband has been on Namzaric for three years now. I had placed him in a once-a-week daycare (excellent program) specifically designed for people with dementia but he fought me every week about going and I finally gave up after five months of his complaining.

In addition to caring for my husband I had been caring for my mom in our home for the past four years. She suffered from congestive heart failure. During her four years with us she had her ups and downs, good times and some hospitalizations. Six weeks ago she was hospitalized with bronchitis and became very weak (she was 96). I brought her home under hospice care and hired round-the-clock caregivers through an agency. They were wonderful. Mom grew progressively weaker and two weeks ago she passed peacefully in her sleep.

Although we had a good experience with hired caregivers, I don't think that would be a good solution for long-term care. When I feel I can no longer care for my husband I know I will place him in a facility.

From reading all your good suggestions I think the best course of action would be for me to join a support group and to start visiting memory care facilities in my area. I feel in my heart that the time of my placing my husband is months away, not years.
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Oh my, I can't imagine. This must be so difficult for you both. I placed my LO, but, it wasn't my spouse. That is much different. What does he say about it? Is he able to discuss it?

My LO, (cousin) had no short term memory when I placed her in a regular AL. It was challenging, because she could not learn anyone's name. She also could not recall where things were located. And she felt out of place, because, she couldn't follow conversations and she repeated things over and over. Other residents were not able to tolerate too much of this. She would forget where she was going on the way to the dining room. She couldn't remember to pull call chain in the bathroom. It's a struggle for them due to these things, especially, if they don't have a lot of supervision. So, there is a lot to consider. But, I couldn't get her to go before this point, so, we had no choice. Her doctor insisted at this point, as she could not live alone safely.

She encountered the same issues at Memory Care, which is where she moved to soon after her stay at AL, except the MC staff were better equipped and the other residents were more accepting and shared her struggles.

I would have a facility in mind though, because things can change quickly and you may encounter odd behavior, sleep disorders, agitation, incontinence, resistance to care, etc. These are not uncommon and its' stressful for the caregiver. I would go tour the place without him first to get an idea of what it's like. I'd be prepared though, because, you may see people that you think are much more progressed than your LO. The only thing is that the progression can occur quickly and things change from week to week.

I agree about finding a support group. Do you have family and/or friends to help you through this?
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You can also make the very tough decision to keep him home.
I decided that I would keep my Husband home as long as it was safe for him and for me.
I decided that the cut off would be if he tried to hurt me or became violent in ANY way I would have to place him
I made the house so it was safe for him. (I am VERY lucky that the house was built handicap accessible)
He was compliant throughout his illness.
Early on he was in Adult Day Care. When he could no longer attend (he tried to leave) I placed him in a Memory Care facility that did Day Care.
When he got to much for them, they have full time residents that are a priority, I got caregivers to come into the house.
As he declined more I was fortunate enough to have the VA help with a program that would help pay for more time with the caregiver. The most difficult thing was finding GOOD caregivers.
At one point I decided to call Hospice to see if he would qualify. He did and he spent the next almost 3 years on Hospice. So with the help of the VA and Hospice I was able to get all the equipment that I needed, the help that I needed and the supplies that were needed.
As long as there is a documented, continued decline a person can remain on Hospice. It is not just 6 months. I think what qualified him from the start was the fact that he had broken a hip within the previous 6 months.
So the question for you is ...rather questions...
Can you care for him at home?
Are you physically able to care for him?
Is the house set up for it?
Do you have help?
Biggest question is what type of relationship do you have?
Will you and he be willing to let someone come into your home and care for him?

There is a big cost factor.
The expense of Memory Care is high
The cost to your social life, the cost of renovations if necessary can be high, although some can be offset by a variety of programs.
The cost of Caregivers is less if you hire privately but the consistency of an agency is reassuring. (hired by you, a caregiver calls you at 7am and says they are having car trouble and can't come in, an agency on the other hand can send another caregiver to you)

Ultimately the only one that can answer is you.
But from friends I have talked to ...by the time you place someone it is already past the time. By that I mean that everyone says ..."oh, I shoulda done this sooner"
I will say a little prayer for you tonight since you can use a little more help in answering this question...
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Always stay a step ahead. While he has some cognitive skills start visiting places to get his reaction but do not talk cost in front of him. Also check out visiting services. It takes about a month to file paperwork and move someone in. Why wait for a crisis.
One valuable tool is to find a support group. They are in many locations and have convenient times. Check the alz foundation and call local nursing homes for locations.In support groups if you have a concern especially about safety issues the group will respond to let you know when it is time to make a move.
Early onset is a "particular animal" that rapidly progresses. If you have a geriatric psych facility nearby inquire if they have a support group.
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This is a tough one. I was told not to wait too long but just couldn’t place my Mom. I think you will know when there’s no other choice. If I had moved her earlier, she would have begged me to bring her home. By the time she moved to a dementia facility, she had progressed to the point she thought I lived there too! Trust your intuition.
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There is something I wish I had done for my mom that you might try..... when she no longer could understand why my dad was in bed from a heart attack (and couldn't take her out to eat) and me living there for 2 mos completely threw her routine off and she became violent towards my dad which she would have never done in her right mind, that's when I had to place her in a facility for my dad's sake and my sanity (since she never slept). What I thought would be a couple or three weeks for us to catch our breaths became 7 long years. Here's what I wish I had known (but I was desperate at the time) look into adult daycares or respite day/night care at a facility. I don't know what part of the country you live in but Texas has them both. Unfortunately I didn't know about adult daycare until it was too late. Each day for a few hours or just a couple of days a week (you decide and depending how your husband does) they go and are around others like them but they do things that are of interest to your loved ones or at least they try really hard. Check into different facilities about respite care also. At my mom's place they had a couple of people that were dropped off in the mornings when the people had to go to work and then would be picked up afterwards. Sometimes it works out and sometimes it doesn't. But it's worth a try to give yourself a break. It's very hard on a body to keep on top of things and to do everything yourself. It's like taking care of a toddler.....only with them you pick them up and take them away from danger. That's why God let us have babies when we are young :)) I have been care giving for 10 years. My in-laws (deceased), my mom(deceased last year) and my 95 year old dad who is declining. I lost my sister 3 years ago.

It's hard to watch someone you love and someone who was so on top of things lose their memory day by day. I agree with the posters.....all you can do is be prepared. Each person's chemistry is so different. It can go slow as in my mom's case or it can go fast as in a friend of mine's dad. Supports groups are great and have a lot of information plus you will be with people in your area that you can reach out to but don't forget about us too. I have gotten several great ideas from all of the different care givers and and their situations! Good Luck and may God Bless
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Tea4Me, when you said Early onset and that you both were young, I think that I was thinking about Young Onset dementia. I'm not sure about the difference in that and Early Onset. Still, I'd prepare for what you might encounter. Only you know how much you can handle. Unless you care for a person who has significant dementia, it's hard to describe. The constant stress and anxiety were the worst for me. It's much more than someone forgetting things. It's sleep disorders, agitation, repeating, resistance to bathing, dressing, taking meds, pacing, wandering, incontinence, etc. I hope that you find what you are looking for. This place is a great place to come for support and tips. I learn something here every day.
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Tea4me.....I am so sorry for your loss. So you have been care giving at both ends, your mom in home and your husband. I'm also 66 and am pretty worn down from all the drs. visits, phone calls, and at 95 we just sold my dad's car. Now I drive 30 minutes almost every day to stay on top of things or to take him to do "errands" (rolling my eyes:)) He lives in a retirement community, one side independent with meals, housekeeping etc. the other side is full assisted living which will not be long that he will need that.

My mother's roommate in her Alz/dem facility was 60 years old. Symptoms for at least 5 to 8 years before her husband could no longer take care of her. It always shocked me because that's so young as in your husbands case also. My mom didn't start showing symptoms until she was in her mid to late 70's. Up until then she was so vital, intelligent, humorous, so active and ALWAYS dressed to kill. It was hard to watch and be there. My sister (who passed away at 64) could barely make herself go see her it hurt her so bad. My dad, well, the same thing so it was up to me or another way of putting it......I think God put me in this place to be a care giver to everyone and everything. Seems that's how it's gone the last 10 years. I always tell my husband that my retirement fantasy doesn't look quite like I thought it would 20 years ago. But things change don't they? And life?? Well, it's a heck of a ride. Hang On.....

Again, I'm sorry for the loss of your mom and going through this with your husband. Many Blessings to you
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The belief is that everyone needs to be in a facility, and you can adjust better when you take an active part in the decision making, and you are better able to adapt at an earlier stage. While that may be true it does not mean you should rush him off to a facility if you have enough supports to care for him at home.
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For Tea4me - the decision whether and when to place someone in MC or not is really very personal. IF you feel you are up to the task you could keep him home. Not everyone is cut out for care-giving in this respect - it is a very tough (progressively) and mostly thankless job and I knew I could not manage it (mom, not a spouse).

If your home is or can be made safe and has/can have all the bells and whistles that might be needed (safety bars/bath seat, block off stairs, prevent wandering, etc) AND you have the finances to support in-home assistance (eventually you WILL need help as it becomes a 24/7 job), AND you can handle it, you might consider letting him remain home (at least as long as possible.)

If you cannot see yourself being the care-giver for long, then yes, start checking out places now. Find the one that you feel HE would like best (bring the kids along for support and input as well, even though the decision is being left in your hands.) When you narrow down the selections, you could take him for a visit and see how he reacts. Definitely do not discuss financials and probably best just to say you are checking on future living arrangements for BOTH of you... We let mom think the VA is paying (we are applying for benefits, but it doesn't cover the cost!) That is another option to consider - if he qualifies there are multiple options (in-home assistance, monetary assistance for MC or even VA places.)

As far as when, that is really up to you. AL should not be considered as there are no real safeguards for memory impaired residents. Moving to MC for people with dementia can be early or later - it depends on how well the person functions. If they just need help remembering when/what to take for medications, YOU dispense them or use a locked pill dispenser. The repetitive questions and statements you learn to redirect focus or change the subject, etc. When it becomes too difficult for you, then you either bring in help or make the move. In-home help can also be used if there is a waiting list for the facility you choose.

Whenever the move is done, regardless of the stage, the person is going to have issues "adjusting" and may never accept this as their home. That you will have to accept and deal with on your own (or with support group.) If you set up his room there with as many "memorables" as possible, familiar chair, bed, books, etc, he may adjust a little better.
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