I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I would like to hear your opinion. Do you understand how I feel or do you think the acquaintance I mentioned in the blog is correct - that I should be scolded and get over it?
Joan, I'm much in the same mode as you. Although I have visited all the facilities in my area where friends were, I have never gone to "check them out". On the other hand, my DH has said to me that "we ought to go check on nursing homes". I've told him I know all about them. I can't imagine taking him. He has said he will probably go kicking and screaming - but for me to do it if I feel I need to. And I will ---when the time comes. We don't have that many choices here and he is no where near being placed (at 87 in April!). My PCP will see that he is placed in the best facility possible when/if the time comes.
I don't think you ought to be scolded or told to "get over it". You aren't ready yet.
There are just some things we don't need to know until we really need to know it. Just as our dh's don't need to know their future. You are doing all the planning you can, why subject yourself to the pictures in your head of that facility all through the day and night. UGLY. You do not have your head in the sand.
Well...the resistance to "looking into your husband's future," so to speak, is a personal thing. We all have different realities which most push our pain buttons, and this--apparently--is a big one of yours. I would look at it, and others, if I felt I was anywhere close to the need, and I don't think it would hit me with an emotionally overwhelming clobber, but that's just me. Over the years of sealing myself off from the ongoing trauma of losing the best relationship in the world, I've become downright almost-cold. Well...not cold, but clinical, let's say.
Of course you recognize that there's an excellent chance you're going to have to both look AND make a decision at some point...but if there's no expediency in looking now, and you don't want to, well...don't.
Joan, I understand what you are saying. I have visited a nursing home several times to visit friends/people from our church and never gave it much thought. When I went last week to see a friend it kind of hit me that my DH could end up being a resident there and I thought "I don't want him here". Common sense tells me I won't have a choice because if he can't take care of his daily needs I won't be able to either. At 4'10" and 91lbs I would be in way over my head! DH has lost weight but I still don't think I could handle 155lbs and he is a foot taller.
Here I am, stepping in 'after the fact' that I lost my husband to AD at home. I will say however, that I visited several facilities in three cities in the last few years. Some were horrible, others absolutely beautiful. My daughter commented that she was amazed at the fact that I interacted with the residents so easily while she only spoke to the Marketing people herself. For me, it was a natural easy way to determine how they were doing, if they were intimidated, comfortable, and felt safe. I will find a way to volunteer in these facilities someday, because I believe they need to see friendly faces and sense that they are still people. I know Foster enjoyed visitors, even though he didn't remember them later. Joan, you're NOT an ostrich,however, I do think it's a good thing to visit these people and spread your light. It will also help you appreciate Sid's efforts now. Knowledge is power.
I must admit I am surprised that you weren't over there the first few weeks....gaining more insight into the disease itself. Just goes to show how different we all are. I had an insatiable curiosity about Alzheimer's, and like you, wanted to know as much about it's progression and consequenses as possible.
I can't imagine not planning ahead. My girls and I researched facilities in our own time frame when we were calm and open to suggestions. Being in a panic mode is not the time to make rational decisions.
Knowing what the future probably has in store for our LO's, being informed and educated, making plans and decisions with this knowledge in hand, does not mean that we need to live the 'future' now. There is enough to handle in the here and now, sometimes similar to others, sometimes unique to our LO. It is enough to handle each crisis as it comes along and to cherish each moment of joy or laughter or love as it happens now. You, Joan, amongst all of us do not have your head in the sand. Not as far as I can tell! You are brave and courageous and caring.
Joan, In early December I placed my mom in a dementia care facility. She had been living for a year in an independent assisted living facility but had a rather sudden decline cognitively. I was told that the independent AL facility was no longer a safe place for her. So, after carefully finding her first facility, I made the rounds, alone, of the dementia care facilities. I was truly shaken by the experience and as you may remember, my husband has EOAD. I practically begged a nice AL facility to take her. Long story, I was so distraught at having to make this sad decision for my Mom while at the same time knowing that somewhere down the road I may be doing the same for my DH. I now know that the decision for my Mom was the right one. I would love to keep her home here but cannot leave her with DH due to all of the reasons that you can imagine. A fifty eight year old man with EOAD cannot provide care for an 86 year old with ALZ while I'm at work. Now, when we visit Mom, I notice how much DH enjoys the careworkers (they are truly terrific) and the activities that we participate in with Mom. It gives me a very sad and lonely feeling to see him there. A "prefiguring"? A final note, I made the leap to sign in on your website at my lowest point with the facility touring. There was truly no one who could understand the effect that visiting these places was having on my psyche. Every topic that you bring up is totally on target. Thank you.
I am also "after the fact" and my dh died at home. I am a lot like Em. I more or less "detached myself" from the situation over the last few years. I did not visit any NH but I did know 1st and 2nd choice if the time came and it almost did. Hospice was working on the paperwork when he suddenly made a nosedive through Stage 7. I called the NH last year and asked them if I needed to put his name on a list and they said no.
I don't think anyone looks forward to ending up in a NH but the fact is we are only on this earth for so many years and eventually death will take us all, one way or another. When the time comes the caregiver is unable to take care of someone the fact is - we have no choice but to accept and go on.
I think "detaching yourself" from the closeness of the situation is helpful in bridging the gap I now find myself in. I am doing fine but I have lost my "ground". I had structure taking care of he and my Mom and now it is all Me. People deal with situations differently and that doesn't necessarily mean one is doing better than the other. If I lived next door to the NH, area I can't imagine myself not venturing over there once in a while. I wanted to do Obituary, burial plans, Funeral plans, clothes a few years ago. DH nor my Mom wanted to talk about it so I finally did it all on my own and personally felt better that I had plans in place for when things happened.
We toured a couple of places for our Mother. One was so depressing, so heartbreaking I could hardly bear it. Fortunately, we found a nice one nearby. With DH, I knew I was in denial for a long time--and so what? I was protecting myself, that's not bad. At the same time I knew deep-down what was happening but I didn't have to face it until I HAD to face it, then I dealt with it, no major problems except for heartbreak--that's there, prepared or not.
In your place, from what you write, I'd think the next-door facility was just fine. I wouldn't feel any need to go look at it. As others have said, we're all different. You'll know when the time comes to lift your head, meantime, protect yourself.
JOAN: Cut yourself some slack. So what if you're choosing to be an ostrich about one aspect. You'll get there when you're ready and I have a feeling it will be sooner than later. When I read your piece it really hit home because I have my head in the sand about so many things. Since DX three years ago I have remodeled one house, orchestrated DH's government retirement (whew!), moved us across country, bought another house, renovated another house entirely after taking it to the studs, have had so many physical problems myself I can't even believe this is my life, and then August 1 took a bad fall which leaves me with a constant headache, just to name a few. These are my excuses but I don't have really good reasons except that I feel I'm drowning a lot of the time and that's when I just crawl under the blankets and don't deal with the things I should. I made an appointment with a elder care lawyer and was so confused about the way she recommended going that I haven't followed up, so that's still hanging over me. I make lists of nursing homes in nearby towns (all at least an hour away) but haven't yet gotten myself there. If I had accomplished all that you have I'd be so proud of myself. As it is, getting out of bed in the morning and seeing that DH has interesting things to do seems a major accomplishment.
That said, I can do better and will! You, Joan should be damned proud of yourself FIRST. Then get over there and do what you know you can when you're ready which given your history I'm sure will be soon.
Funny thing......in going through our home office, I found an old telephone book I needed to throw away. It had some pages turned down, some post-it notes in it. I looked and saw notations my husband had made several years ago .... apparently looking into nursing homes for himself. Right there on the pages were notations of prices, services, distance, etc. In the end, the hospital made the choice for me. I had a choice of four nursing homes within the standard 50 mile radius of our home. I think I picked the best, but unfortunately, the furthest from our home.
And, emily, I too have become cold and clinical about all my thinking about my husband. This is a mean, devastating disease. It takes away everything....even when you think you've already lost everything about the relationship. I do believe my husband has been sick since I married him. Even his children agree.
Well, since you moved to the villa it would appear you've already pretty much made up your mind that if Sid needs placement at some time in the future (and there is no guarantee that he will) the facility next door is where he will go. So, decision made. If you don't want to physically go tour the place, don't.
I think we would all do better if we did not pay so much attention to what "others" say to, or think of, us. Just my opinion.
Joan It's great to be an ostrich.. It is so much better than me being a dog! Never feel bad because you did not visit the Neighborhood.....Neighborhoods can change overnight, and pretty soon you can hear someone say "There goes the neighborhood". Joan.. you can visit, or evaluate the homes and do all types of research, but everything can change in a flash if Mr. Rogers leaves, and Nurse Bertha takes over. Any place can seem like Utopia one day, and make the headlines for abusing patients the very next day. I think the key is to have a basic plan, but not to make decisions unless it is necessary. There are no guarantees that your plans will go smoothly, and you may have to change them. I think the key is constant observation, and a stubborness to accept only excellence from paid professionals. Even the best nursing homes treat some patients differently, and they prefer the "easily managed and pleasant patients". I tend to evaluate the nursing home by how they treat their worse patients. Too often, I see them in the halls, alone, and strapped in their wheelchair, while the nurses play solitaire on their computers. I never hesitate to point out their lack of attention, and I am usually quite vocal if they neglect patients. Joan you will be a great ostrich, and there really is not much need to investigate much until the time is proper. Conditions can change overnight, and it is probably best to wait until you really need the services.
No, you are not an ostrich. Your acquaintance is out of line.
There is a pretty good chance that your husband will never end up in a nursing home. Hospice is a lot more likely. And from what we've all been seeing lately, the families that bring hospice in are more likely not to need a nursing home unless the main caregiver is also working or the patient has uncontrolled violence issues.
Joan, you know what they say about the best laid plans....well I used to know what they said, but I think I forgot...! I had always assumed that my husband would just move into a really nice NH that I knew from when my Mom was there for Rehab....but, when the time came to find a place for him they wouldn't take him because he was too aggressive and so young...they worried about their elderly and infirm residents. So, even though I had a plan it didn't work out. It took weeks to find a place that would accept him. So cut yourself some slack.....you will do what you have to do when you have to do it.....!
Vickie, I can't believe your husband would suggest looking into a nursing home for himself. I can't even bring the subject of my husband's illness up, let alone talk about an eldercare lawyer or nursing home with him. How good it must make you feel knowing you have a husband who cares so much that he even wants to look at a nursing home to make things easier for you. You must have a terrific marriage.
Bev, I was at my lowest when I first met DH. We have had a wonderful marriage-partnership - 36 years now. He always supported whatever I wanted to do - career, home, whatever. He still continues to try to do that, but is somewhat harder for him now, since he doesn't really understand everything that is going on. He was and is the love of my life and I will do whatever I can to make these last years easier for him.
Bev, my story is similar to Vickie's. After dx, my husband told me that he didn't want me to kill myself taking care of him, that if I needed to , I should place him. I hope that won't be necessary, but if it is, I will remember that conversation and hope it makes it a tiny bit easier to do.
At the beginning, when Sid was first diagnosed, we talked about what the future held for him. I told him I would always take care of him, but when I could no longer do it physically, I would find a good placement for him, and I would be there every day. At that time, he fully understood and agreed.
Since then, his reasoning and judgment have declined, and he occasionally mentions that he doesn't want me to "put him away" too quickly. I no longer discuss the issue with him. Thank goodness we did all of the legal stuff right at the beginning.
As most of you have said - I will tour places when I am ready, and I'm not ready. It is too difficult for me to see my own husband in the blank faces of the residents.
Bev- I also have friends whose husbands have chosen the facility they want to go to when the time comes. Everyone is different.
I haven't read the blog yet, Joan but am quite certain you aren't an ostrich. I believe we evolve into the various phases as we are faced with the needs of that phase. The first time I tried to visit a facility (a few years ago)..I nearly threw up. Had to leave. Choked on words trying to explain why I was there. The receptionist probably thought I was crazy. BUT today is different. I can see that there will be a time when DH will need more care. I'm not ready to think of -end of life- care though.. I'm ready to think of a good place where DH could participate in a day program that provided socialization, a safe environment and a staff who was involved and attentive to their clients. If I had to go find a place for -end of life- stages.. I wouldn't be ready and would probably throw up. If that makes us ostriches that ok..but through trial and error, I believe we are made READY for whatever comes next. When the time is right for you..I'm convinced you'll do what needs to be done with no qualms at all. Thank you so much for everything you do for us.
Yesterday I toured the new dementia unit that is being put in place at our retirement home. It appears to be as good as possible, and I was impressed by the personnel.
Now, how do you make this decision; how do you decide that now is the time. I always said to myself that when he became abusive, or did not recognize me any more, would be the time. Fortunately neither of those has happened yet. But life with him is getting very difficult. His contact with reality gets less and less. For example, he will tell me that he drove to visit his mother this morning. He hasn't driven in 5 years, and his mother has been dead more than 40 years. I am exhausted.
Our two daughters live 300 and 400 miles away. I believe they hope I will settle everything before I drop. So it is up to me to make all the decisions.
every step is so hard. I was at a nursing home for a support meeting last week. the place is gorgeous... Absolutely. Private rooms, clean, etc. One of the members of the group took his wife out of there after a year. she was dehydrated, had bed sores and had stapped speaking. After a stay in the hospital, he put her in a different nursing home, not half as new and gorgeous. She's gained weight, speaks again, etc. Very hard to tell a book by its cover. My immediate reaction would have been to go there, with DH if the time comes, but obvously that's off my list. Now that I've heard this, I'm thinking to myself, maybe I will need to do some due diligence before the fact, but my DH has gone downhill lately, and your Sid is much more high functioning. You are not an ostrich, and when the signal comes that you need to look into NH's, I'm sure you will, and with a vengeance, just as you've done everything else.