I haven't been on this site for quite a while. Time goes sailing by and life has actually been going pretty smoothly. But, the time has now come for me to make a decision as to whether to place my hubby or not. I've found a lovely dementia community not far away that provides a secure environment with lots of freedom for the residents and activities, it doesn't "feel" like you're locked in.
But, I'm so conflicted about this and having a hard time making the decision. My hubby can still do a few things for himself, he's not incontinent yet, and he's so attached to me. I do believe he will have a better life there than here as I can't offer him as much in the way of company and stimulation. I've been told that it's better to place him earlier than later as he will have a easier time adjusting.
My problem is that I feel "locked in" with him and that my life is passing me by. I'm 62 and I want my life back. Okay, this makes me feel somewhat guilty about wanting to place him. I went on anti-depressants for most of last year and it was much easier to live with him and this disease. But, I found that they no longer have the same effect on me and just make me tired all the time and depressed.
I'm stressed and feel guilty and don't know what to do. Can any of you out there give me any advice with this issue?
I am 62 also. I know the feeling of 'locked' in and life passing you by. I think by that how you feel and that you know he would enjoy more social activity tells me you are ready. As for the medication, you may need to up the dosage to compensate for the additional stress. I am on low dose wellbutrin. I thought of increasing it but decided to add Serenity Formula instead. The combo of the two seems to be helping but I still can't wait until he is place. For me it will depend on Medicaid saying he is ready. Being here in the RV park where hb can walk around and talk to people helps him a lot. He is to where he rarely will walk without me. Like you he has become attached at the hip.
Whatever, do not feel guilty. When you place him, you will still be advocating for him making sure he is well taken care of.
I would take advantage of the opportunity to place now. Give it at least 3 months, time for him to adjust and if he is not, you can always bring him home.
If you are asking this question it is probably time. We are often given the choice of the least worst of choices.
You feel it will be better for him and you.
And placement does not have to be forever. I know people who had their LOs move back with them (not always spouses). For some people it is easier to have them home during the end stages.
I probably placed my wife when she was doing better than your husband is doing now. She was on a decline and home life was intolerable for myself and my son and her paid caregivers felt it was time. Her sisters felt it was time a year earlier. He doctors felt it was past time. I think I was the last holdout.
My husband was admitted to a dementia unit 15 months ago. He is happier there than he was at home. That took me completely by surprise, for it never occurred to me that he would be better off somewhere else. But there, he gets personal care from people who know what they are doing (which I don't). He was fully continent when he went in and is just starting to show signs that this might change. The staff have a matter-of-fact professional attitude toward this (which I do not). In the dementia unit, he has structure, daily activities, and friends. I would not be able to provide him with any of those things. I do not feel guilty about placing him, as I don’t think I have done anything wrong. What I do feel is loneliness and sadness that he is not here with me. I visit him almost every day for an hour or two, but that’s mostly for my sake, since I miss him so much.
IMO, we give in to guilt much too easily. Other people expect us to feel guilty and we expect it, too. We often label every negative feeling as "guilt," even though it might be sorrow, anger, fear, etc. It sounds like you are feeling guilty because your main motive for placing your husband is that you want your life back. Well, guilt is not going to help you get your life back. We all know the feeling of being locked up in a very, very, small world. It is not healthy and it lasts much too long.
So you should do what you think is best for the both of you. Some people want to and are able to take care of their spouses at home and others (like me) do not. Some spouses adjust better to LTC than others do. Mary75*, a member of this site, once pointed out that our spouses’ diseases will run their course whether they are at home being cared for us or in a dementia unit being cared for by others. But our own short-term fate is not as certain.
Mothert, I know what you are going through. Placing my husband was the most difficult decision I ever had to make. I am not sure he was happier there but I just could not emotionally do it anymore. I placed him when he was still able to dress himself and do some things for himself. In other words I took the advice from this website of "sooner rather than later." When you place a spouse, the caregiving does not end but it does change. In some ways it was more stressful for a while until I learned how much I could handle as far as visitation, and how to "let go" and allow others to care for him. I placed my spouse to save myself. It is so very true as Mary75* stated the disease will indeed run its course no matter what you do. The first few months will be the most difficult and many people do not survive this and decide to bring them back home. With placement, I was able to relax somewhat. Most of all I slept better as he slept very little and the sleeping was sort of my line in the sand. I felt like my life was passing by but honestly, after he was placed, it is not like I went out and did all these things but I did have more freedom and was not stressed leaving the house with him by himself and not knowing how to use a phone. I look back now and see placement as just another path on the journey. Some people take it and some do not--my neighbor is keeping her husband home. He is 92 with vascular dementia. He has been on hospice for almost 9 months and it is just a slow decline. She is self-paying caregivers to come in and tend to him along with hospice. That is her choice. My choice was different and they are both acceptable. I did not want my small condo turned into a hospital by keeping him home and I did not want the responsibility of hiring caregivers and supervising them. You must look into yourself and decide what is best for you at this point on your journey. As paulc stated, if you are asking the question, it is probably time. Just know you are not alone. We will be here to support you no what decision you make. One thing that placement did for me was allow me to get used to living alone, so after he passed, an empty house was not an issue for me.
Dear Mothert, My husband was, in total, about 18 months in LTC. From about 2009 to 2014 he was at home, back problems and surgery, then Alzheimer’s. I felt, as you now do, that it was a devastating decision – my decision - to separate, but the doctor said it was time; he had had a few falls, some serious, and I was having so many problems getting him to the bathroom (he was about 80 lbs. heavier than me and about 10 inches taller) and it was a struggle. I have osteoporosis, and had back pain from all this lifting, etc. We were blessed to have a good marriage, friendship and partnership, all of which required work, especially at the beginning, but work that paid off in a very close, communicative partnership – it was well worth the work - He had been such a strong man in every sense, but he trusted me and with the illness he became more attached to me, frightened and not understanding what was going on. When he was admitted, he left his bed at night and would wander down the hall, telling the nurse he was looking for me. I believe I was his ‘safe place’, and hearing these reports made me feel so, so guilty for admitting him. But, in spite of all the problems, it WAS the right decision. I was fortunate enough to be able to concentrate totally on him, and spent the days until his bedtime with him. For that, and thankfully for my health and ability to devote the time to him, I am SO thankful. At the beginning, even though he so felt the separation, he was also enthusiastic when they came to exercise him. So many of the other patients told me that it made them smile and be uplifted to hear him walking with the physiotherapist and staff through the corridors counting loudly (he had been in the military) in his own language and English, so enthusiastically. He really felt there was a chance for him. He was such a good man! He gradually lost almost all of his English, and then even his native language. Then there was, I believe, a stroke which set him back. With that he lost so much – his right side, in all movements, his speech, etc. etc. It absolutely broke my heart, but I always tried to be positive in his presence, and to let him know how much I loved him. The last 6 months were very painful for both of us … for him physical and emotional pain – for me the pain of watching - how can you not feel the pain/stress/fear they are feeling? I think it is impossible. Now I am almost 2 months since his passing, and I miss him so much – A few weeks ago I lost my big sister, who introduced me to my DH, and they loved each other – another blow, but she passed of a massive heart attack, surrounded by family. She loved everybody, and everybody loved her, so, somehow I am not so saddened by her passing. I flew home, and we had a celebration of her life, and about 100 people attended, all with stories of her … she would have loved this celebration. I so long for my husband, but think that, in the end, it was best for him. I don’t know how long I could have been able to care for him. Whatever decision you make, knowing that your DH’s welfare and yours (knowing you have to always be there to protect him) is most important. Wishing you all the best in whatever you decide.
Thank you all for sharing your stories. They do make me feel better with the decision I am about to make.
Tonight we went out to eat dinner and he couldn't cut his meat or navigate a knife at all. Everything lately seems to validate that it is his time to move on to another home with those who can help him better than I. It literally takes my breath away just thinking about this time to come, but I know it must. I spend all of my time thinking about it, am so preoccupied with the decision. I know that when this house is empty of him I will be so sad and so lonely, and then, what? But, that's all about me, I must make this decision about him.
Yesterday I was planning to set the wheels in motion to move Herb to The Cottages asap. As my head, shoulders, back and stomach hurt, I began having second thoughts. I talked to my friend Marlene (the voice of reason) and we came up with this plan.
On October 11 I will place Herb into the Respite Care at The Cottages for 1 week and I will go off to the ocean alone to relax and think and pray about what I’m doing. This will be kind of a “dry run” for both Herb and I to see how each us handle this situation. I haven’t told him anything about this and won’t until very close to the time to take him to Marysville.
If he’s settling in well, I will probably leave him there until his journey northward (heaven). If not, he will come back home with me and we will give it another try in the spring. Of course, leaving him depends upon room availability and if my heart can take it. I’m guessing that one week isn’t going to be long enough for him to settle and we’ll be looking into the spring.
I Know that my window for a successful adjustment for him is narrowing and that I have to do something within the next 6 months.
This is THE MOST DIFFICULT EXPERIENCE/DECISION of my life. As much as my head knows that this is the right thing for both of us, my heart is really struggling with letting him go.
mothert, That sounds like a really good idea. Even if he does not adjust in a week, maybe you would not have to wait for spring - you could have him go to the Cottages for respite once a month (if they allow that). But I'm keeping my fingers crossed that the week in October will be successful for both of you.
Mothert, that sounds like a plan. I put my husband in respite for about a week and took a vacation just like younsre planning. While I was gone they called me about his urinating and when I got home a room came available where I was on a wait list and my children and I decided together. It was like everything lined up. Remember he will adjust. The question is more about you and whether you can handle the separation. There is no right or wrong decision.
I would be very happy if October was the time. I'm seriiously thinking about increasing the time to at least 2 weeks and coming home after week 1 and just being alone in our house. That's going to be the biggest adjustment for me, being alone in the house. For 32 years, he's always been there. I was so independent when we met and very happy living alone. Now, its going to be a big adjustment. I know the Lord and my friends and family will be there for me; but it feels like I'm jumping off a cliff.
The residence my husband is in has a year-long waiting list. When a space opened up in the dementia unit at the beginning of last summer, I thought about passing it by and waiting for the next available space. The reason I was stalling was that I felt so bad about his going in. But a friend pointed out to me that I would feel just as bad later in the year as I felt then, and I would have to go through the same agony all over again, for no reason. That made sense to me, so I went ahead. It was harder for me than it was for him, but I survived.
Bam - just like that I hit the wall yesterday. Doesn't really matter what it was but there it was, I could not function and was an emotional wreck still am and cannot handle any interactions without feeling the stress well up in my chest.
I made a number of calls yesterday and have meetings set up for beginning of week, resources are Available but putting them In place will result in more emotional upheaval and I have no reserves left. Lisa is not accepting of any help so anything I do will require a battle. It seems like it Is just putting off the inevitable but I am not ready it is all so fast. Have not even started to look at places have had no time to. This is going to be very difficult ( just called a stupid asshole as she walked thought the room why I don't know). I am afraid I am have reached burnout and am going to crack.
I know I will get through the concern is what shape will I be in.
It's great to be appreciated when we're giving like we are.
If the resources feel like they're gone and the body and soul are ready enough to make the calls - it's probably time to find the way to get through this.
It will keep deteriorating. It's not going to get better. If Lisa is in a place that is safe for her after you get over the shock of doing this - you will start to recharge the batteries. You can sleep more soundly, manage your time, and have quiet when you need some time. That will help a lot in keeping going.
I'm sorry you're facing this. I'm sorry Lisa is facing this. It's the disease that's doing all this.
Rona, if you can afford it, try to hire a geriatric case manager to help you find the right place and support you while you go through this traumatic transition. A good one is very knowledgeable about the facilities available, can assess your wife as to what she needs, and talk you through placement. For me, it was money very well spent.
A lady came to live at the LTC where Kevan is and she was quite a hand full he staff took the time to help her transition but it wasn't nice. She called staff much worse names then you got. Now after a few months she actually is laughing with her table mates and is smiling. Her Hubby only comes in about three times a week now and is looking much better. You of course will be "sh*t on toast" for awhile but you will eventually be alright. The others have given you some good advise check it out.
Rona, Like marche, I hired a geriatric care manager to advise me. I also asked her to come with us on the day my husband was admitted. She was very knowledgeable and very helpful. If you decide to do this, make sure to hire someone who does not accept referral fees or commissions from facilities. You don't want someone who has a conflict of interest.