Daughter Olivia and I were with Jeff at the ALF this afternoon. Near dinnertime, we escorted him to an easy chair near the dining area so he would be nearby when eating time came. A tiny older lady, a fellow resident, was seated in the chair next to it.
"Who are you to him?" she asked me. "Jeff is my husband," I replied.
"And who is she?" she asked, motioning toward Olivia.
"That's Jeff's and my daughter Olivia," I said.
"Oh..." she said, pondering. "I didn't know he was married. Some of the ladies have been making eyes at him."
I just smiled and said, "That's ok. I'm not a very jealous person."
Now I'm wondering whether that explains why one of the younger female residents gave me a small, discreet punch in the hip the other day as I walked Jeff by, holding his hand. Or maybe she was just grumpy that day.
bless his heart, new rooster in the hen house! sounds like the punch might now have been an accident. so many new things thrown at us everyday. i would have to say i would have mixed emotions as dumb as it might sound. :(
Not dumb Donna...I think lots of people do. It doesn't bother me at all. Sometimes Jeff knows exactly who I am and what our relationship is, and he completely appreciates me as his wife as we hang out, and sometimes he's completely perplexed about why I'm spending so much time with him.
Still, I don't think he knows Angelina Jolie from Winston Churchill, in general, so I think the interest is apt to be one-sided. We'll see. Won't freak me out either way.
I should add though, if any of the ladies want to date him, they should first have to sit next to him at a meal, while he aims his spoon at the plate, misses, and pushes all the french toast and scrambled eggs onto the tablecloth. (Yes, he gets help eating, as needed.)
your a great wife Emily. learning to let go at the right time is tough beyond my imagination( or maybe having some motivation to have to help you make the move like it or not) and girl the utensils for the food are long gone here. it is finger foods or being feed. and our inside dog does not ever need dog food she is a vacuum , right under his feet at meal time. if the dog is not in and floor has been mopped we can go for longer than the 5 second rule!
emily, glad you aren't upset by this latest development. I'm on the same page, whatever would bring Steve contentment would be good with me. I had even asked the head nurse if he thought Steve might find a "special friend", but he said no, that he's a loner. You might ask the staff about Jeff in this regard, just out of curiousity. I agree with Wolf, that the punch was not an accident.
donna L, I almost laughed out loud when I read about your dog not needing dog food (can't laugh out loud cuz DH wants to know why I am laughing & he never undersands what I tell him). It reminded me of feeding my 1 year old granddaughter dinner last night & having our dog hover around the table waiting for the little handful of food that she threw down. I know that sometime in the future it won't be the granddaughter that throws the food on the floor.
As for how I might react to DH having a “special friend” if he is ever placed. I've learned not to say that I would do this or that in any situation because I am a firm believer that you really don't know what you would do until you actually are faced with the issue. BUT as donna L says, I would also probably have mixed emotions, but I would hope that I would feel that same as marilyn & emily, that as long as he is happy then it will be fine.
Wolf, I agree-the punch was no accident. Staking out her territory. I too would have mixed emotions abot DH having a "special friend". Emily you might want to speak with the head nurse or director as marilyn suggests for 2 reasons-to find out if they think it is likely he will have a "special friend" and also to make sure they notify you if someone is being aggressive in trying to establish a relationship with Jeff. We had that situation when Rich was in the ALF and I wanted it on the record that she was the aggressor (going into his room and getting into his bed) in case anyone complained, including her. I also wanted to make sure they kept an eye on the situation since they told me that I would have to agree to the relatioship, which I was not ready to do.
I applaud you and Marilyn on your ability to let go.
Interesting thoughts. She did seem to be grumbling and giving me a bit of the stink-eye today, but as long as I am friendly and greet her, it seems ok. This particularly lady mostly rambles around muttering random syllables, and Jeff mostly just stands or sits when he's not being assisted by an aide in an ADL, so it seems unlikely to progress beyond passing thoughts and dirty looks, but I'll ask.
Yeah, you folks are right. This afternoon she and Jeff were both sitting on the ottoman. Jeff in his usual posture--unfocused, looking more or less at something invisible on the rug. Carol sitting there too, babbling away in her usual string of syllables. Howard, the "neighborhood" director, distracted Carol for me so I could take Jeff away without upsetting her.
Nope the punch was no accident...this little lady resident was letting you know you are trespassing on what she thinks is her feller...and there could be others that think that way too. It happened with my uncle...tall good looking gent that he was....none of the ladies gave my aunt or me a punch but they were masters of the dirty look.
Funny thing, our Alz LOs who find themselves in a facility seem to go on without a worry about relationships and yet we out here, are concerned with what others would think if we were to even so much as go for a cup of coffee with a gent friend..be it brother or someone else, by those who have never lived this life.
Although I'll add...my own mother said (when I told her that I've seen Carol's husband come in now and then,) "You can all go on a double date!" And then she laughed. Ha. I don't know. He doesn't look like my type.
Emily, you just reminded me of a story. Lloyd had a girlfriend years ago who ended up marrying his brother within the last year. The last time they stopped by to visit and were getting ready to leave, Lloyd planted a big kiss on her lips and hugged her. I laughed so hard, I thought I would pee my pants. I told her that when he doesn't remember me anymore and does remember her, I will pack his little suitcase and send him with her. She said she was only taking one husband home and I said if that was the case, I will keep mine!
I have found that if I am very friendly and make a big deal of Carol when I see her ("Hi Carol...what a pretty shirt!" or admire the doll she's carrying around, etc) then she is not so mad that I'm hanging out with Jeff. It is funny to see though...he was standing in the dining area and she was most definitely giving him the look-over as she ambled by.
One does have to laugh about it. Lynn had several women trying to be his "girl". He doesn't know how old he is, and thought these women VERY old, he calls them all Mum. Must be a turn off for the ladies lol. When they found out I was his wife and not his daughter there were a lot of snide remarks and dirty looks. I just had to laugh about it. After a few months of going every day the ladies backed off. Good thing, I would have hated to "fight" them LOL
this subject is so sweet in a way. emily I love how you have to be nice to Carol just to have a peaceful time with Jeff. That she has a doll says a lot...
I hope I don't have to deal with this. I plan to keep DH home until the end - BUT....I've read where so many others have said this and things got so bad they just couldn't do it. I will never say never.
Dazed, I hear ya! It is also my plan to keep Lloyd home until he can die in his own bed with me holding him. It's scary, but such a simple thing to hope for. ! want him to go peacefully, quickly, surrounded by his things and me and no strangers.
If you plan on keeping your spouses home until the end. Where and how do you get trusted help to make this possible?? Would it be help around the clock or just during the day?? How old are your spouses??
Does it make a difference if they are young or old if you want to keep them to the end. Example: If your spouse is in the 80s you can probably figure it would just be a few years of caring around the clock. But, if your spouse is in the 60's could you do this for maybe 20 more years??
I planned to keep my dh at home and luckily was able to do so with minimal outside help because he skipped some of the things many of you are having to deal with, and also our two daughters live nearby. Had I of had the incontinence issues, wandering, violence etc. many of you report - I would have placed him with no guilt.
I did have a facility located that I preferred if needed. Keep positive and perhaps you can realize your goal of keeping them at home but at the same time...prepare for the unexpected..many of you will be like me and not have the deal with incontinence etc. Don't worry about what may happen next week..it may never happen to you..
My husband, 86, was bedridden for a year before his hip crumbled, probably when we were moving him to change him and bathe him.. thereafter it took more than two people to handle him and he went to the hospital (no surgery) then to a nursing home where he died a month later. I agree with Lois that I'd have placed him long before if he had been less compliant or more violent.
You do what you can as long as you can, and hope that's enough.
Emily makes a point in her Fischer Blog which I think is very important......parphrase.....placement if it is happen to wherever facility is a tool in the caring of our Spouses. Every tool we need to use we should and without any quilt to what that choice is. My thoughts are to keep him home with me and have help. Couldn't afford a long term $$$ facility and survive on the other end of the journey but will do what I have to when I have to.
Among the things I am very pleased with about Jeff's ALF is that it is so close to my house that I can be there often. It has also proven beneficial for me, mental health-wise, to see more people on a day to day basis and interact with them, and I very much enjoy the staff at the ALF, as well as interacting with the other residents. I think it's a function of the kind of awkward person that I am, but it was going to be harder for me to get comfortable with having people in my house than it is for me to get comfortable making a space for us there. But that's just me, we all have our quirks and different things will work for us. An important factor was that Jeff has so much lost his ability to identify his surroundings, or the people around him, that it is not apparent that he feels any less "at home" there than he does here.
Still, there are times that I am wistful, and just wish he were in the house with me. There is no perfect solution.
Judith, Lloyd is 62. He was diagnosed 3 and 1/2 years ago and had signs as early as 5 years before that. I used to work midnights and take care of him during the day on little or no sleep. After my mother passed away, I took a leave from my job and took him to Florida for 3 months in 2010 and stayed with my ex-son-in-law. I had a year's medical leave so I took it. As I got near the end of it, I turned in my notice. Before I went to Florida, I gave my son-in-law here money from my inheritance and he put a third story on my house. The home improvement store he works at gave him his discounts on everything he needed and his dad helped him. In November 2010 he and my daughter and their 2 teenaged sons moved back home. That is how I am able to do this now. I sneak out to the store on occasion, take him to church every Sunday with my son, take him for rides, and have card club once a month with my friends. My daughter lives here and "babysits" when I go. We took a second trip to Florida this January because I knew we would never get to go if we didn't go soon. My 18-yr-old grandson made the trip with us and did a lot of the driving. He is also physically able to pick up his Grandpa and carry him where he needs to go if necessary. My daughter has made this so much easier. She stepped up and rented her house out and came home so I could quit work and stay home.
JudithKB, you made some very good points. No way could I take care of DH 24 hours a day as he declines and, like Emily, I wouldn't be comfortable with someone here in my home all the time. I take DH to day care two mornings a week instead of having a caregiver come in. If he could just stay like he is (sweet, agreeable, loving, still using the bathroom, etc.) until Hospice time. Probably not going to happen. Imohr, you were so fortunate. A licensed social worker leads the support group I attend. He told me I need to think about "What's next." Don't really want to think about that.
Yes...we all need to think about "What's next". I have bit the bullet and Tuesday...my dh will be in an ALF for one week so I can get respite. If he keeps declining I will place him full time. This may sound terrible. But, at the present time, this is my thinking......
My dh has no real quality of life...he sleeps 16 to 18 hours a day. Yes, he is mobile when he is awake...but rarely is he up for more then 2 or 3 hours at a time. This has been going on for over a year now. And, I am the one also...that has no quality of life. He was dx in 2006 ...and the past two years he has been in my care and never without me where ever I go except for the past 6 months for 4 hours every Wed.
I have become a prisioner in my own home. Why should both us be required to be basically "house bound". Sorry to say...but, other then feeding, taking care of his clothes, etc. he is just another body in this house now. He just sits and stares....I don't think I am required to give up my life to take care of someone that has no life, by most standards. This sounds so terrible...but, I think I have finally faced the facts that face me head on and will only get worse.
JudithKB, don't be surprised if he really likes it there! You never know the stimulation may bring him some happiness. I was shocked at how well Dado took to having this home care. Strange to see that he likes to be with some one else so much.
(Now...I have put in for 3 WEEKS!!!!!... at the VA Hospital in Honolulu, (Nov. 15 thru Dec. 7... like I mentioned before, it is supposed to be a good place.) Plus he will have some of the regular visiting nurses that he knows. I almost hate to say this, but , a girlfriend wants to take me to Tahiti for two of those weeks, fighting off the guilt as I wanted to go there with him.
I am so looking forward to hearing how it all goes with you. PLEASE plan a little something special ok? Wow that would be weird if our guys found some ladies making eyes at them there...
You go girl...Tahiti sounds wonderful. Don't ever feel quility...you have earned your right to have some fun and rest if it does no harm to your loved one.
Today's stange thing...there is usually something different and strange every day. He called the dog by my name..."come here Judy...come on get on my lap". Guess that is better then calling me "Sophie" the dog's name. LOL
We are all so used to hearing that people want to "die at home" "not go to a nursing home", etc. But we have to keep in mind that when dementia enters the picture, it is a completely different story.
I had this romanticized version of the advanced stages in my head--I would keep Steve at home, could supervise all care, he'd get better care, etc. Didn't work out that way. But actually, that version was really for my benefit--not his. He has no idea where he is, and the facility is physically so much better for him than our home was. Also, he has always enjoyed being around people, and now, he has that opportunity 24/7. So in our case, my initial prejudice against institutional care was completely wrong--I guess this just proves you need to keep an open mind.
My experience has been like Marilyn's. (despite our initial major adjustment hiccup!) Jeff works really well with the staff, and they are fond of him because he is sweet, by nature. One of the long-time staffers in his area told me about how she was working on something one day, and Jeff had quietly walked up behind her and said "thirsty" in her ear. She was startled and amused.
When I get those pangs--and I get them frequently--of wanting him here in the house with me, I only need to think of how he was this year, prior to moving to the ALF. He no longer knew our house. He no longer consistently knew me or our children, or our relationship. Familiarity (aah, sigh...MY bathroom, MY bed) no longer existed.
Now, in an out-of-it mood, he sits in a comfy chair doing nothing, much as he would here. In a mellow, happy mood, he smiles and pats everybody on the back. They're people. He likes them as much as he likes me here at the house.
I stopped and thought about this the other day: If I could design the way in which I would take care of Jeff, it would be at home--but it would be in a context where I lived with more family members, and there would be more options for getting a break and trading off caregiving, so that no one was left without opportunities to go out and do other stuff. I have often said I wanted Uncle Charley from My Three Sons to live with me, and that really would be perfect. More family who fit right in, AND who are happy and willing to pitch in.
Without that, I was suffering from doing it alone, and the loneliness and sameness of life without more opportunities. Even with my kids sometimes around. They are young and starting young-adult lives, and I would not want to pin them to caregiving.
Thank you for this thread. Some of you may have read that beginning Tues. I am getting respite for one or maybe two weeks so that I can get much needed rest. This will be atthe ALF that I will be placing my dh in probably sometime later this year.
Last night I was thinking how so many new people come here and many of them just reading that we don't know about, but when they finally begin to post we all welcome them and give them information from our many years of experience. I think from now on my first advice to them will be, nothing is set in stone with this horrible condition. What you may think early on about placement and/or keeping your spouse at home may very well change after years of being a caregiver. Don't make the mistake of a decision that in the future you may want to change and have your spouses family saying..."But, you said you were always going to keep him home until the end." This could just be more grief for you. Just say something like...."I am going to do my best but I don't know what the future holds for either one of us."
Will be thinking of you Tuesday and all the next week, and here is to some sweet time. Your guy knows you love him, I am sure. I liked your comment on why should we both be house bound.
It brings up another thought, sometimes when I have to tell him over and over to not do something, not to move my projects around, and it frustrates him, I tell him, "I know this is hard for you, but if you can, remember it is not MY fault, and I am doing my best"