In a couple hours I'll be in a car with Dh on the way to airport to head off to Portland for a long awaited 9 day vacation visiting one of my best friends. This was a particularly exhausting day for me dealing with last minute carpenter, builder, and medical and legal issues, and the help the assistance I had engaged to help out cancelled so...well you all know.... Early this evening DH told me he had put most of his clothes in a pile (he had his own suitcase on his bed) and that maybe I could check his closet for some shirts to go with. I checked his pile and was stunned.
It was one of those milestone moments we all have marking further decline, perhaps entering another stage, dreaded stage. He performs all ADLs without problem as far as I can tell, does tend to wear the same tshirt for a few days running unless I get it and throw it in the wash. But he has always packed for himself as he used to travel frequently on business and just in June went to visit his sister in North Carolina for two weeks.
When I looked through his "pile" he had made there was one pair of underwear, three tee shirts (all either dirty or torn or with paint stains), one pair of socks, a couple pairs of shorts, both dirty, one ripped, and a pair of jeans with SUSPENDERS. This for a 9 day trip.
I kept up a good front and went through his closet and made a pile to wash. When he left the room I made another pile of clothes to throw out. My heart was breaking. And I was so so tired and felt so alone as I began washing loads of clothes trying to get both him ready and me ready and the house ready for the work that will be done while we're gone.
When I called my friend and told her about DH's entering a new stage and how hard it was and described what I just did above she said my DH and her husband would get along just fine as he wears suspenders too and maybe she said something about her husband. I know how much she cares about me and it was clear I wasn't even beginning to explain what I meant by telling her this. I ended up calling her back and trying to explain that so many have trouble knowing how to react. She seemed to think I was concerned about how they would react to DH but I was more concerned I think about how they might react to me. He's going to appear fairly fine I think and I might appear stressed, exhausted, and alone in my own feelings which I don't seem to be able to easily convey. She seemed to understand a bit better when I said that it's like my son watching his son hit all the baby milestones and toddler milestones, but I'm watching it in reverse.
Okay, to finish packing. A night without sleep probably wasn't the best thing but there it is.....How to better get our friends to understand?
I splurged on 3 nights in a 4 star hotel in downtown Portland and a lovely B&B in Eugene where we'll visit my niece. I can't help thinking so many of these things might be the last we'll have together. God this is hard.
CHARLOTTE: We'll be in downtown Portland Wed through Friday. Email me if you guys can maybe connect with us.
I have been packing DH's suitcase for the last 3-4 years if we take a trip. The problem I have is I can't find his dirty clothes. Then I discovered he's putting them back in the drawers. Sheez.
I did the weekly laundry--7 pair of socks, 7 hankies, 7 t-shirts, no undershorts. 1 pair of jeans that I had to grab and 4 sweat shirts that I rescued from the dresser.
I reminded him again about changing his shorts every day. He assured me he did that. So, I asked where they were. He got so mad at me. "How the hell should I know where my dirty clothes are. You suppose to take care of that."
Today we were playing cards at church. He got sore and started cussing in that venue. I could just feel my face getting hot. And here I am, acting as if nothing is out of the way and what was everyone looking at anyway.
I should be an actress. Bet I'd become famous. :)
ps--this has been a very difficult week or could you tell? :)
Terry, yes, heartbreaking, those moment when the gradual decline seems suddenly so apparent. DH used to be excellent and efficient packing; We always travel with just two pilot bags that we carry onto the plane. But the last year he can only help by choosing 7 pair of socks and 7 pair of underpants if I ask him to (kind of silly since there's not a chance that he'll change them every day). Hope you have a great time on your trip, you deserve it!
Mawzy, the only way I can get his shorts in the wash is by grabbing them on those rare moments when he's in the shower and sneakily replacing them with a clean pair. If I forget it my heart sinks when I realize he's putting the dirty ones back on. No way to prevent that if I'm too late.
Our friends--even the most compassionate ones--can never understand unless they have experienced what we have. Even if they've taken care of a parent with dementia, there is more empathly, but of course we all know that isn't the depth of loss we have. To be fair, if things had been different and I was on the outside looking in, I'd be concerned and sad for my friend, but I know I wouldn't fully "get it" either. It's great, Terry, that this trip will actually give your friend exposure to your husband--I think that's the only thing that even cracks the surface of understanding. You can tell them until you are blue in the face, but it's nothing like them actually seeing your husband struggle to do something simple. So many times, after being out with them, friends have commented to me about what they saw "he couldn't undo his seatbelt", "he couldn't find the restroom--he went into the ladies' room", etc. Words do not exist to adequately describe what we are living.
Several years ago we were packing for a cruise. I was supervising to make sure we had all the necessities and even put his suit in the suitcase. When we arrived and unpacked, no suit. Now on previous trips he had forgotten a tie or a belt, small things that could be replaced. We had to rent a tuxedo for him to wear on the formal nights. Not a disaster, but just one more stress to add to what should have been a restful time. Now, I am getting to the point of avoiding trips, concerts, plays, movies because taking DH is so stressful. No matter what I do to make things easy, he gets lost going to the restroom, or loses his hat or his coat or his something else.
After a weekend away with a "live-in" friend, I found g is far better around others at this stage. We had no outbursts, agreeable talks (not much true conversation), little help, but generally pleasant...nothing like it is at home, but my friend did notice the roller coaster times during the day and commented on it. Of course, she is patience itself by nature, very unlike me! She has had severe hardship in her own life, and deals with everything calmly..I do believe that she "gets it". Very old, dear friends joined us for dinner one evening...he has Parkinson's/Dementia and she was so happy to spend time with others that do"get it"..her words. Turned out to be a very nice easy time. However, that said, others absolutely do not understand and couldn't unless living it...they think they do and say just that, but it is a joke!
Unless experiencing something like this with a spouse,no, they don't get it. One woman from church had repeatedly told me how well DH is doing. I asked her to come spend the day with us. Our kids are starting to see the dementia with their dad if they receive strange telephone calls from him or see how panicky he gets if he can't "find" me, but they don't try to spend more time with him. I will have cataract surgery Oct 1 and plan to involve the three who live nearby. Our daughter has offered to do it all, but I thins the sons should help, too.
Terry, I too find these things extremely difficult. My DH, when having a tantrum, decided he was going to leave me and go live with our daughter in Salem Oregon. Now this is 12 hours away, and not something you would do for just a day or so. He packed a suitcase, one pair of underwear, two pairs of socks, a pair of jeans, and I think he threw in a hat. No shirts, meds, toothbrush, or shoes. I was shocked. Even though he was mad, I still thought him capable of packing his stuff, at least to make it look like he was really going :-). Interesting experience. I forgot about it till I read your post. There are so many signs now, I can't deny it anymore. It is interesting with friends, and for some family. Our children, all grown, have a real hard time thinking he has any problem. When he is around them, he really puts on a good front. I've sort of picked up on the idea that they think I'm a whiner, which maybe I am, but thought at least the family would be a little comfort. My son-in-law told my daughter, "your dad hasn't changed a bit, he is the same as he always was". That really upset me. Do they think I'm lying? Exaggerating? I sort of get the same from friends. If I do talk to them, the usual reply is, "I just can't imagine he is that bad, I mean he seems just fine". They look at me like I am a total mess of a person, like you said, stressed, exhausted, and alone in my feelings. I have about resigned myself to the fact that they can't understand, they don't live it, see it, or experience the pain and anxiousness I experience watching this disease consume my husband. So, I come here which is such a release for me. My Father, who lives close, at first really thought the doctors were out of his mind. But since he is here often, he has now seen so many things, that now he realizes that yes, in fact my DH does have a serious illness. He has at least tried as best he can at 85 to be somewhat of a support to me. Oh, we're flying to Portland next week to see our newest grandchild. A little girl born the 14th of this month. We are going to Salem though. I had two of my children in Eugene, love that town. Have a nice time. Hugs, Linda
Coupla years ago I offered my California son a week in our Monhegan rental in exchange for a week of dad-sitting while I was there. He accepted. It was the best way for him to learn what was going on. I tend to cut my other son a bit of slack because he has a non-working wife and a demanding job. He does understand. OUr daughter lives here, gets it, and does what she can.
I think DH's daughter, who was very aware of the problem and also proactive, really experienced some of what it's like when I was away for a few days visiting my new great-grandson and she accompanied him to a dr. appt. The usual behavior that I hardly even noticed by then really shocked her. She's been a huge help and aware of the many problems because her father-in-law, who lives about 70 miles away is in a later stage, so she's aware of what's in store. We both agree that we want to keep DH relaxed and happy and able to enjoy life to some extent.
Terry, in answer to your question "Can our friends ever understand?" The answer is no - unless their spouse comes down with Alzheimer's. They can sympathize, offer comfort and love, all without fully understanding, and you waste your breath and energy even trying to get them to. Also, it can create deep cracks in your relationship if you expect something that they aren't capable of giving. Accept the friendship and love - you need that. Accept the fact that only HERE can your situation be fully understood.
I hope your trip went even better than you expected!!!
Mary, you are so right. I had a sister-in-law that had alz and at the time I didn't understand. I could kick myself now for not being as helpful as I could have been.
A woman in my community is in early AD. I gave her husband all the info including the best doctors in our area. They followed through with everything and even liked the doctors. My problem-she keeps calling me for every small problem and talks in unending circles as she forgets what she originally wanted. Even with my understanding of the disease my patience is wearing thin. How can we really expect "outsiders" to understand?
My mother in law had alzheimer's. and we took care of her in our home for 4 years, and I DID NOT UNDERSTAND...much to my regret now...my dw did such a great job with her that I was only in the background and wish I would have helped more....I should have understood, but my dw made it look so easy to care for her mom.....WOW was I wrong!
I know this cannot work for everyone, but our best friends were very concerned to know how they could help, and so they both read "Learning to Speak Alzheimer's." We get together with them as a foursome about once a week, for an outing, a movie or just drinks so they see a lot of dh's behavior. The guy takes Siem out for a drive in his camper occasionally and says he gets along so much better since having read the book. His wife is a psychotherapist and has read several other books with me and I tell her a lot while we're swimming. Siem was over at their house ranting about me one morning (that stupid Jeanette was trying to get him to take so many pills) when we were all getting ready to go out together. They dealt with it well and calmly. I think I could say that they understand pretty well, and I'm so lucky to have them. My son and his wife have also both read this book and I hope to get younger son to do so as well.
Terry - I understand your feelings of understanding that "he had turned a corner".
My husband has lots of beautiful clothes - casual. He always wears one pair of cheap baggy jeans and a navy blue pocket tee shirt that may have costs $5 - all stretched out. I have stopped "helping" him with his clothes a couple of years ago as it caused too much tension.
I finally asked him why he didn't wear his shorts since it has been so hot - he gave me a blank look and asked "where are they". They are in the drawer underneath the drawer where he keeps his jeans.
He is very high functioning and also takes care of his ADLs but I am noticing that there are areas that I have involve myself more for his benefit.
But, it does hurt so much to have that "moment of truth" to a new decline. Those are the hardest ones for me - not when he is hollering and being negative, but the moments when I am alone and I discover this new info.