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I have been the primary caretaker for my husband who has LBD with Parkinson's along with recent significant Capgras Syndrome. He is 18 years my senior. (59 and 77). Together for 30 years. I put him in A.L. for a week and he did horribly so I brought him home. He was not even able to do his ADLs while in the assisted living home. After being home for 1 day all that knowledge came back.
After two weeks at home he barely knows who I am. All friends and family tell me I MUST put him in Memory Care. This man is my soulmate, my life, and I love him with every fiber in my body. I don't think I can live with myself if I put him back in A.L. but I just cannot continue to care for him. I can't even make a decision, all I do is cry. I feel like I will be giving my disabled "child" over to people that don't know anything about him or his needs.
How do you live with making this decision???

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You do it for him!
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Hey Jimswife,
Everyone is very skeptical about this idea, but I wish people would try it more. Why not try to fight these chronic diseases? Regular medicine has not come up with anything half-way decent for fighting dementia. But other researchers have found that many of these chronic illnesses are caused more by lifestyle. Change the lifestyle, lessen the disease.

Check out Dr. Bredesen's protocol for dementia. Just Google Dr. Dale Bredesen. I think you'll like what you see. Also try Googling the Italian Doctor Antonio Constantini (https://easyhealthoptions.com/italian-doctor-curing-parkinsons-disease-with-thiamine/). He has had a lot of success treating patients with a heavy dose of Vitamin B1 (Thiamine).

Based on what I looked up about Capgras syndrome, it sounds like if you can lessen the dementia, this might be a little less as well.

Don't just accept what your Doctor says as well. They're only human too. I own several assisted living homes and I am implementing a lot of diet and lifestyle changes for my residents to improve their conditions instead of just loading up on drugs. We still follow the doctor's orders, but we supplement it with very natural eating and exercise. The results have been amazing. We've even sent a few people home who have become well enough to live at home.

I've implemented these lifestyle changes myself. I'm 52 and it's amazing how good I feel. Like I'm 25. I just had my blood pressure checked and it was 96/57! You can fight these diseases. You just have to work at it.
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smeshque Jul 2019
true, I have seen it work, Must be committed to the changes and be up for the challenge, but it does work. Dr.'s do not know everything,
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Sorry you're in this situation, it sounds heartbreaking. It seems you have 3 options:

1. Use the money that you were going to pay for the facility and hire someone to come in and provide him the care he needs in the home 24/7.

2. Move him into a memory care facility that also has an independent living side and you move into that side. That way you can still see him every day and even have meals and activities together. Maybe you could sell your home to afford this.

3. Go back to the way things were with him in MC and you at home. You can still visit him every day and eventually the staff there will get to know him and his needs. They will help him with his ADLs and if his care gets too great, then you may have to move him to SNF.

It sounds like you have a great love! Sometimes loving someone so much means letting someone else take care of them. It will be hard, really hard at first, but it will get easier and you will have a new normal. I wish you the best.
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Hi JW,
Have you thought about getting help inside your home?
Maybe you wouldn’t need it all day but a few hours break every day can refresh and revive your sinking energy and mental outlook.

Might be worth a try before committing to Assisted Living again.
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Seniors always become very confused and disoriented when they are out of home in hospital or respite or permanent care, for a approximately 2 weeks at least it takes to settle in... then they become more oriented.... I think this can account for his confusion. It would have been helpful if someone would have told you that... so, I'm sorry because it would have helped to know this. So, if you try again, know that the first 2 weeks will be like this, and then it will get better. In those first 2 weeks, let him settle in, don't visit or stay too long.

With regards to the decision, I was thinking... that so many people have said, that when a loved one needs alot of care... they really appreciate being able to remain being "a wife" or a "husband" and not be turned into a full time carer. If a person is forced to become a full time carer, they often feel robbed of the time they can just be together as partners. So, this would be a great benefit to you - that when/if you made the decision for him to go into care - that all of the physical needs will be taken care of - and you will have of your time and energy to be the wife that you so beautifully want to be for him. If you are a carer, I doubt there is nothing left as you wil be exhausted and your efforts will not be optimal. He needs professional support around the clock as you know. Best of luck and wishes to you both.
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That is your decision. You know what you can handle, better than anyone else. What don't you think about home care, to help you out.
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This is not about you, this is about your husband. If you are at the point you, yourself, cannot make good decisions, something must change. The people at MC are trained to deal with people like him, they do not need to know "everything" about him, they will figure it out. As for taking him home after a week you did not give him enough time to get settled in, and perhaps you were too involved in the process, being a helicopter caregiver is not the answer. It is very obvious that you love him dearly, do this for him, because you do. You can visit him on a regular basis after he settles in, but, I might suggest that you manage your visits when he is placed. The home we are placing my step-dad in request that in the beginning we stay away for a week or so to let the patient settle in. My best, I know how difficult this is.
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My mother is in a wonderful memory care facility and has a suite that's like a fancy hotel room. She's cared for by a team of caregivers that genuinely care for and about her, and I'm relieved that she's in capable hands. The MC has 24 residents and about 12 caregivers. It shouldn't be killing you to place your DH where he will be safe & cared for properly......it's too much for YOU to do alone, regardless of what others say about getting 'in home' help. It's not enough; they reach a point where they need care 24/7 and that is more cost prohibitive (in home) than placing them in a memory care facility. You can go visit him daily, if you'd like *after you give him a chance to settle in* and that will help you feel better about the whole decision. It's tough, there is no two ways about it, but don't let 'guilt' prevent you from doing what's right for HIM. He'll adjust......it does take time, however, so allow him the time to do so. Love often means doing what's best for the loved one, no matter how hard it is. I'm so sorry you're faced with such a hard decision, dear woman. Sending you a big hug and a prayer for the strength you need to make the right decision for both you and DH.
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LexiPexi Jul 2019
Can you tell us what area of the country you live? Our caregiver to patient ratio in Arizona - isn't anything like yours.
Requirements for big facilities or group homes is:
day time 2 caregivers for ten patients
night time 1 (awake) caregiver for ten patients
I don't feel this is enough. I have not been able to find a facility in the Scottsdale / Paradise Valley area (of Phoenix) - that has a higher caregiver to patient ratio - no matter what the cost. If the patient requires additional care - it is suggested we hire a private caregiver. That would be fine - if it was only for a few hours a day, but obviously, one never knows exactly when that few hours is needed most - as routine can change from day to day. Has anyone else in the greater Phoenix area found a wonderful location?
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We had my Husband's Mother living with us from age 76 1/2 to age 92 1/2. She had no short term memory ability due to surgery to repair 2 brain aneurysms in 1997, when she first had a major stroke. Six weeks of being in a hospital in Oceanside NY did nothing for her recovery, even though her only son was there all day long everyday. We had her flown to Colorado and used a hospital that had a transitionary unit, then we used a medical rehabililtation facility to help her with physical therapy, etc. Then she came to live with us. She was now ambulatory, but dual incontinent, on coumadin, hearing was a bit diminished, she was happy to be with us, though a bit sad that she was no longer on her own, doing the things that she used to do. We kept her busy & walking, watching TV, shopping and attending events. In Dec 2000 we were able to treat her to a trip to Hawaii, but the flight back home to Colorado was very long, the levels of the coumadin had gotten out of whack and she was showing signs of having a low level stroke symptoms. We took her back to our hospital again. They installed an IVC Filter in through her system to help prevent further stroke occurrences. And due to our altitude she was to be on oxygen from now on. Both were a great help. We only wanted her to be with us for as long as she would live and we believed she could make it to 105 with good care. However in March 2013 she contracted pneumonia because a person with a serious cold had sneezed and coughed near her. I took her to the ER expecting to get her back home but they kept her for her a week and only made things get worse for her by saying she could have nothing by mouth, she passed away at the end of the week. At age 92 1/2 they seemed to be determined that she was not going to get better at all. We were very upset and since then we do not want to trust doctors, hospitals, nor nursing homes. In 2014 I began taking care of other elders who are cared for in their own homes with family members who feel about the same as we do. I did lose one other elder friend to a nursing care memory unit. She passed away 4 months after having been put there by her family who lived out of state. There was nothing wrong with her that she had not been coping with for over 90 years. But being there killed her spirit. We could not visit her as often when she was there as we could visit with her in her own home that she loved and missed so dearly.
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annemculver Jul 2019
Please don’t let this eat you up! You did what you HAD to do. I did the same for my Mom, at the rec of her doctor and her facility - where she had been in independent living. There comes a time; it is heart-wrenching but it does. My Mom lasted 6 months in AL; she realized there were no other options - and (I think) decided it was time for her farewell. <When is life worth living and when is it not?> I suspect we will all reach this point, if we live to a natural end. Our guilt is natural, but it’s something we need to work against, too. Godspeed!
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Hi Jimswife. I am also in the same boat. It is VERY heart-wrenching and more emotionally difficult to leave a spouse in a facility than to leave a parent, sibling, or relative there. The emotional connection is stronger and much much higher. It does not mean you love your parents or relatives less; just different kind of love.

Others have suggested that you should spend the money on hiring caregivers at home instead of on MC - RIGHT ON. It would give you a chance to relax. I am doing that now because I am still working. I have yrs to go before retirement. But if my husband continues to live when I hit retirement age, I will probably not going to retire to keep my sanity intact.

Lastly, MCs are NOT cheap! Where I live, the monthly fee is $10k-15k per month, depending on needs Some locales are cheaper, but as his needs increase, so will the cost. If your husband is incontinent (single or dual), you will be expected by the MC to have a caregiver to help him with those activities. Their employees cannot attend to your husband’s needs 24/7 because they have other residents to look after also. Without your own caregiver, you husband will be sitting in his filth until someone comes to clean him up. So, getting outside help will add more to the cost. MCs should be the absolute last resort, in my opinion.

You are doing the right thing by asking for help - first here and then I hope home care. Please let us know what you decide and how it has impacted your life. We are here to learn from each other. Good luck.
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Were your roles reversed and he was caring for you under the same circumstances, what would you want him to do for you?
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Hi Jimswife,
I am very sorry you and Jim are in this situation. Worriedspouse gives great advice as in the same spot as you. If me, I would do as others have suggested and get some in home help. I don’t believe 24/7 is needed. Residents in MC or NH do not get 24/7 care. They are in a building with staff 24/7 and getting cared for when time permits. Your LO is not able to ring or ask for help so often waiting their turn as someone also said I believe. I care for my Mom in my home with Alz, vascular dementia, NPH, and she is having a very difficult time with mobility and can barely walk at all on some days. She’s been incontinent for many years but would wake during the night often two to three times to want to use bathroom. She would already be wet so it was a change at that time only. This was exhausting for me. As her condition progresses she doesn’t wake during the night anymore for the bathroom. Using barrier creams will keep her skin protected so I don’t see the harm in waiting for the change when she wakes up. I find the more sleep she gets for her sick brain the better she does during the day. I also of course do better with the additional sleep. This site has been invaluable to me for advise on how to manage day to day ADLs etc. I know the road ahead for us is going to get much more difficult. I think about that but don’t get too dragged down by it. One day at a time is my new motto. It was work for me to get there as I am a planner to a fault typically. I will bring in resources to assist with transferring and bathing as needed. My Mom has never asked or expected me to care for her. I can’t imagine being in your position with a soulmate and struggling. I would try some in home care and come here for support. This is about you and Jim. Both of you need to be considered here. If your heart is breaking I think you should at a minimum consider in home help. You mention your family and friends and their thoughts. Are they able and/or willing to assist you with caring for Jim? I didn’t mean to make this about me and my Mom but just wanted to share my thoughts and hope it helps. I had a soulmate myself and know the strength of that bond. Keep coming back here for support. Sending you a couple of hugs. Remember you are not alone.
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Been there - done that & I mean all of the above suggestions. My husband was misdiagnosed with dementia when he had actually had a series of TIAs after being on a trip at altitude. Medication for dementia sent him into a psychotic state. First ASL Place totally ignored him totally. I “stayed away” as suggested and in 3 days he was dehydrated & sleep deprived & re-hospitalized, in rehab for 21 days & in another MC faciiity. Although they were sweet & caring there the food was horrible!!! He didn’t need to be diabetic on top of heart disease, partial kidney failure, & cognitive issues. I knew he didn’t have dementia because he could play trivia perfectly, recognize everyone, & relate correctly events going on correctly, but couldn’t do other cognitive tasks. The longer he stayed there though the worse I felt about leaving him after every visit. After 18 months and a report that his congestive heart failure had worsened, I brought him home so he could die in peace. Guess what - he started improving. I have 24/7 caregivers & home health. It was absolutely the best thing for him, but having “strangers” in my small garden home is killing me!! So stressful dealing with the constant changes in schedules & never knowing who will be there. So, nothing is perfect. I’m doing what’s best for HIM. My suggestion would be for YOU to get counseling & rest immediately. When you’re exhausted you can’t think straight & you can’t be a good caregiver or spouse. Let people help you!!! Every situation is unique & this site is a wonderful resource for suggestions. Know you’re not alone & you are doing the best you can at any given moment. I wish you all the best.
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You tell yourself that you're doing this because you love them and it's what's best for them. That's what. Look for another facility as it sounds like this one didn't do right by your husband. And call the Alzheimer's Association. They'll help you through this.
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OMG. My husband also Jim had Capgras after surgery to reduce a brain tumor He knew who I was when we spoke on the phone but that eventually became heart breaking He called friends to find if I was at their home when I was home with him he called 911 to say I was an intruder in his home I could go on and on. Eventually his cognition and memory suffered and the VA was able to help with some Adult Day Health and some home aides a few hours a week. The VA also allowed for 1 week of respite a couple of times a year all of these things helped.
Many other issues to numerous to put in words here but he was loved very dearly and I was never able to put him into assisted living either
I have now lost him and I know at least I didn’t abandon him. You do what you have to do for yourself and him and don’t let anyone make this decision for you
God Bless you on this terrible road you must travel as I have been there with all the sadness and the tears.
And I know how you must feel.
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I didn't. I prayed to God every day for guidance and patience. I managed to keep my DH home until he passed.

I put a message on your wall, telling you a little of how I managed. BTW, I was a 24/7 Caregiver - having no one to assist me. But my sister did some of my shopping the first 2 years, until her DH became too ill as well, but for the "care" part of it, I only had HomeHealth which came once a week until DH's last 3 days when he was finally accepted for Home Hospice.

Only you can know what to do - I was told Nursing Home by people who thought they were helping me. I said No, I will keep him home and ambulatory as long as possible. The only times I called for help is after I could no longer pick him up by myself. For me, keeping him home was the best therapy I could get for myself. Even during the period when he didn't know who I was, I just told him I was the crazy lady who loved him and took care of him. Keep it simple and you'll get the smiles even if he isn't sure exactly who you are. Give him time to remember - it worked for us.
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I have to ask a few questions.
Is HE safe at home? Can you safely care for him now and as he declines?
Are YOU safe caring for him? Can you safely transfer him? Bathe him? Is he violent?
The safety issue was the pivotal point for me. As long as we were both safe then I could continue to care for him at home. If at any point it became unsafe then I would have had to make the gut-wrenching decision to place him in Memory Care.
Luckily he was compliant, I had help from the VA as well as Hospice.

Two more questions for you...
Is your husband a Veteran? If so you might be able to get quite a bit of help through the VA and even more depending on where and when he served.
Is your husband eligible for Hospice? It might be worth it to make a call to find out. NO longer is there a "6 months or less" focus. The main thing is to remain on Hospice there needs to be a documented, continued decline. That is very easy to document with dementia. Hospice is a great help, you have Volunteers that can come and sit with him while you run errands and get some "me time", you will have a Nurse that will come weekly a CNA that will come a few times a week to help bathe, dress, order supplies. You will have a Social Worker that can help with lots of things as well as other people Therapists, Chaplain that you can request. And medications and supplies will be delivered so you don't have to run out and buy supplies. And you will get the equipment that you will need to safely care for him and the equipment will make it safe for you to continue to care for him.

But all that is great as long as it is safe.
I am not talking just physically safe but include emotionally. Care-giving the love of your life is difficult. To watch him disappear is heart wrenching. This is no longer the man you met, fell in love with, married. This is a stranger. You might catch a glimpse of the man you once knew but that will be fleeting.
You will need to hire caregivers. Either through an agency or privately. (again the VA could help with some of those hours.)


Another thought...Assisted Living. Sell the house move in to Assisted Living with him. You will have help as he declines and you will not have to be on your own with caring for him. He can remain in the facility if you decide to go on an outing but you will return at the end of the day and you can enjoy yourself knowing he is safe. You will not have to continue maintaining the house, no property taxes, no gas bill, electric, minimal food bills....Just a thought...

And there is no "wrong decision" there is no "right decision" YOU do what is best for you at the time. And I will tell you what is right for you will change.
((hugs))
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CaregiverL Jul 2019
She should move to apartment or continue living in house as long as she wants...HE needs to move to MC or Nursing home. She’s much much younger than him.
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A week isn’t a long enough trial. It takes a good month for someone with dementia to settle in.
The benefits you can’t provide at home are skilled professional help tailored to his particular needs and socialization. Both of those help people with dementia do better for longer.
You aren’t giving up on him by sending him to Memory Care any more than you are giving up on someone you send to a hospital. You are getting the care he needs to live as fully and for as long as possible.
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LexiPexi Jul 2019
Thank you for the comment - we are not giving up on them... by sending them to memory care. We wouldn't not send someone to the hospital - so why would we not send them to MC? I guess the reason might be - a hospital is temporary and MC is permanent.
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You are in a horrible situation. You are only 59. You recognize that you cannot care for him. You recognize that you hurt without him. The man who was your soulmate is not the man for whom you are now caring. His needs will only increase, and that can lead to resentment and caregiver burnout. He needs professional care. Bring him back to AL/Memory Care. You will still care for him just in a different way. Be open to allowing the professionals to help him and you. Also, find yourself a LBD caregiver support group through the Lewy Body Dementia Association.
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You are up against a very difficult decision. I see below some suggestions for new and unproven, anecdotally based treatments; I do not say they won't work, and I think evidence is not in on many treatments, many drugs; but I think the LAST thing you need now is to step away from Western Medicine into the confusion of unproven and desperate measures. Of course I am an old nurse, and I come at it from that perspective. I have seen few remedies in my time that have come to much other than a sort of "snake oil" approach. There are some, and they are usually picked right up and used by the medical community. I just think there is enough on your plate without those desperate experiments, unless you find comfort and hope in them.
My opinion only, and many here as smart or smarter than me would disagree.
Now, to your dilemma. I just read Kate Mulgrew's Memoir of helping her father die of lung cancer and helping her mother over the course of 5 years with horrific dementia. Ms. Mulgrew is an actress, and she was able to provide 24/7 care with trusted caregivers all that time. That is not an option for most of us.
You have said you CANNOT DO THIS any longer. I believe you. You have expressed great love, but you still knew you had to place your husband, and you did so. You then brought him back.
I think that you are wanting to make this OK in some way. I think that you will never accomplish that and that you now need the help of a licensed social worker familiar with life change challenges to help you comb this out a bit. There is no way to make this Ok, good, comforting. There just isn't. This is awful and will remain awful. This is loss, sadness and a long slow decline. This is hard, desperate, guilt provoking. And there is no way to change that. You are going to have to come to some acceptance of what YOU can and what YOU cannot do. I am 76. It was clear to me when my brother, 85, was diagnosed with both a benign brain tumor pressuring his balance system and a probable early Lewy's Bodies Dementia that I could not take care of him. There was no more than a few second's thought. Not a matter of love. A matter of ability.
I hope that there is some support around you, or someone you can speak with honestly. I am so very sorry. This is tragic. There is no way to EVER make this OK. Not everything can be fixed, or changed. And acceptance of that fact is one of the most devastating things you will ever face. It is grieving when a person is still alive. They tell us that there are many things worse than death. I spent my life as a nurse, and death is the one thing I do not fear. Because, yes, there are so many harder things, and that is the truth.
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LexiPexi Jul 2019
Thank you for your response. You are so right - "There is no way to ever make this ok". As women or caregivers - we are use to 'fixing things', finding a solution, making things better, helping, etc. Sometimes, we just can't make it happen. Even though we realistically know this, it is hard to accept it.
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This could be me... I know how you are feeling. My now 75 year old husband was diagnosed with Parkinson's disease in 2002, now has dementia and is clinically blind. Most of the posts here, as well as, people I talk with have to make a decision about a parent. For some reason, it seems so much harder with a husband / spouse. We've lost so much already, but just cannot go on. The care is unending 24x7. I don't feel I can keep him safe any longer. Everyone keeps telling me to get help in. What they don't realize is the cost. If he enters a facility or group home, it is one third the cost of in home care. If one knew it was only going to be a year or so, one could plan accordingly. However, it could be much much longer (per the doctors). I'm tired of listening to friends and family (even though most of them mean well and are concerned about me) suggesting what I 'should' do. Until one lives this situation, they cannot imagine what it is like (not the professionals / social workers, etc. either). I think I've finally convinced myself that taking care of my husband doesn't mean I have to do "everything" for him myself - just oversee his care and do what I can do. I know longer have time to read, but I read a couple of books in the past that might be helpful for you and others. The 36 Hour Day and Ambiguous Loss. Thank you for your post. I, too, look forward to reading some of the answers from others.
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Hi!
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With a lot of anxiousness, a lot of visits, and finally realizing that if I don't get rest for myself, I will also get down physically and there is no one to help me, so I did it.  Now, I have had to move my mom from about two months of MC to another facility DESPITE all of what I have done for her over the past 3 1/2 years since I have had her as my ward.  She was assaulted at the facility, twice, and now I am searching and think that I have found, with her agreement, a facility near my house where I can visit freely, and they seem eager to have her there because they want things to go well for her and for me, and they KNOW from my initial questions of, "Do you beat up people here, or do you allow people in your care to be beaten up, because if you do, I won't put my mother in your care."  Then, after they get over my upfront questions to them, I explain why I am having to move her yet again, and they KNOW what I am doing/about to do to the facility that ALLOWED this to happen to my mother.  To say that the previous facility needs to realize that I mean business is an understatement.  Thank goodness that the hospital took pictures, and the police made reports, and Medicare told me where I needed to start with State agencies.  They said that they would watch what develops from my end.  Now I am approaching from a legal standpoint.
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You must LIVE with this decision to place him in a facility because this is your LIFE. I know that it is hard - BEYOND hard, but you must not beat yourself up over it, else you fall faint and ill. Prayers sent.
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Jimswife- I have not read many of the answers, I doubt this would be a repeat but if it is sorry. If it became necessary to place him, have you ever thought of the both of you moving to an AL? A man from my church took care of his wife with Alzheimers for many years by himself, he is early 90's. He needed help but would not place her. So he placed himself with her so he could always be with her. She passed last August and he has chosen to say as his health is not all that great he has always had heart trouble. But rather than place her alone and in his mind abandon her, he and she moved in there together. Just a thought.
You could always move out when DH passes or maybe you will have made friends and like it there and stay.
Just a thought and I feel for you and your situation. I know if it was my husband and I we would definitely do whatever we could to keep each other home. And if it ever came to it we would both go wherever was necessary together. Praying you get your answers that you can live with.
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Jimswife Jul 2019
Smeshque-
One other person suggested this and actually I am going today to check into this. Because our home is paid for, I can close it up and possibly return to it or sell it in the future if I need to in order to continue to pay for Jim's care. I feel much relief in this idea. Thank you for you response.
I will let you know how it goes.
Jimswife
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Here in the Twin Cities area in Minnesota, I hired an agency to provide in-home care for 24 hours a day when my friend became incontinent and started to wander. That cost $13,000 a month. I finally was able to convince her husband we needed to provide the care she needed at a lower cost and got them to move to a memory care apartment I found for them 2 years previously. That was $10,000 for the two of them. After the wife passed on, the husband is still there due to his lack of any short-term memory and it's costing about $8200 a month. Fortunately they had saved and invested money, so I could use their money to cover these costs. When I sold their condo, that paid for another year of so care. I found a place that provides good care, pays attention to his needs and that gave me great advice as the wife's mental condition deteriorated and saw to her every need up through hospice. I have nothing but good things to say about this place and let the people who work there know this and that I am paying attention. I often thank some worker there for the care they are providing--not just to my friend, to everyone that is there. I visited about 9 AL/MC places before finding this one that gave me a choice of a two-bedroom, one-bedroom or efficiency apartment in the memory care floor and my friends needed to go as a married couple. The one bedroom size was perfect for them. And the care for them and advice for me was everything I needed to have.
I wish you the best of luck in finding a good place for your husband. He deserves that and so do you. No one can do this 24 hour care alone.
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Jimswife Jul 2019
JohnnyJ-
What blessed souls they are and were to have you looking after their welfare. You are the kind of friend and advocate all elderly people should have. You are a good and kind person.
Jimswife
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Jimswife;
You posted:
"One other person suggested this and actually I am going today to check into this. Because our home is paid for, I can close it up and possibly return to it or sell it in the future if I need to in order to continue to pay for Jim's care. I feel much relief in this idea. "

Although moving to AL with your husband might seem like a good idea, since you talk about closing up the home and perhaps returning to it, you will have to consider all the costs involved. There will still be expenses associated with the house (minimum RE taxes, possible repairs and general upkeep, utils unless you winterize and have all utilities turned off. Also note that most insurance policies will NOT cover an uninhabited home - you will have to find another insurer who does, and this can get expensive too!) YOU will have to pay for yourself and your husband in AL. For one person it is expensive, for two it could be possibly doubled (sometimes not double, since you are sharing a room/space, however it WILL cost more. Note the person who said the shared room was 10k.) The other issue to consider is you (none of us do) have no idea how long this would continue. It could be months or it could be years! If years, can you afford to pay AL costs that long?

Please consider:
 1) All ALs are not created equal, you have to check/compare carefully
 2) Presumably he should be in AL/MC.
3) A good AL/MC will have intake paperwork, to cover his needs/preferences
 4) Adjustment can take up to 2 weeks, possibly longer - differs for each person.
 5) A Good AL/MC will allow you to visit whenever and however long you want

#5 would allow you to be with him all day, every day, if you choose to, even sharing meals (they would charge you extra for those), and be his wife, not his caregiver (but you can assist when you want/he needs.) Even if you pay for meals, this will be less expensive than moving in with him, and you can spend the day being his wife, not his 24/7 caregiver!

It also allows you to see what care is provided and lets the staff get to know you as well. When you are there often, he might get a little better treatment than some.

Expense wise in-home care can get to be much more expensive than a facility, depending on how much care is needed every day. If you're not ready to commit to MC yet, you could try bringing in help for as many hours as you think you need to give you help and a break. As others have said, certainly when safety (this can be as simple as you could hurt yourself trying to lift/move him) becomes an issue, for you and/or him, then you should reconsider placement. You can still be with him each day for as long as you want.

Something not mentioned, though, could impact the decision. You give your age as 59 - are you still working? If you are, he certainly should not be left home alone, so you would need day care-givers, adult day care or a facility. If not, do you both have enough savings/income to cover the cost of in-home or facility care? As noted above, this could go on for MANY years - you are still relatively young and don't want to deplete any retirement savings leaving you destitute.
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Please know that not all assisted living places are the same. I know, I live in one and was in another one before. This man is obviously going down hill mentally and it will only get worse. You are much younger and you owe yourself to take care of yourself first. You love him and did love him but he is no longer who he was. It is your time now. Find the proper place and visit him but please find the strength of face what is happening to him and know that you must keep going on so you have a future. If you don't do this, you will die of a broken heart and will end up being destroyed. You do not deserve this.
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This may be a very strange suggestion / idea to you -
As has been mentioned, the man you love is no longer the man you are with. Of course, your heart is breaking. I would 'do' a ritual - however that feels right to you - honoring the man your husband was for decades. [It could be as simple as lighting candles, playing soft music in the background, and looking at old photos, letters, writing in a journal, and/or recalling loving moments together over the decades. It could be inviting people over to honor him with you.] It would be akin to a memorial or letting go/a shifting of where you are inside. By doing this honoring, you may release some of the torment you feel in your heart and realize you are with a different person now. This may give you the space to emotional release, clarity, and self-love so you can adjust to this new situation.
I hope this doesn't sound too crude. My intention is to honor your husband as deeply and meaningfully as you can, and allowing him to be on his journey now, with peace.
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tornadojan Aug 2019
Just had to comment because this is a novel idea...sometimes you have to think outside the box! I will keep this in mind for my own situation. Thanks.
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Everyone's care journey is different and no situation is perfect. If you truly feel like Memory care is not a good option have you tried in-home care? In many cases there is nothing magical about assisted living that you cannot recreate from a care perspective in your own home. Maybe give a trial of in home personal care with an aide helping every day. The options in front of you don't have to be you doing everything or memory care. There may be other options worth pursuing.
The one thing that is not possible is trying to manage his care all by yourself. This is more than a full time job for one person.
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