I invite you to log onto the home page - www.thealzheimerspouse.com- and read today's blog on how I'm doing since I decided to stop asking "How high?" when my husband or father asks me to "jump".
I read todays blog and it totally makes sense. I had to stop catering to my hb also because it was killing me. I had no time for me. If he wanted something I'd jump to accommodate him. I decided it had to stop when by bedtime I was so exhausted I went to be crying. I don't do that anymore. He'll get over it. I have to think about myself once in a while and just breath.
Children learn early, if parentsare smart, that gratification is se;ldom instantaneous. Our LOs are still living in the real world, though their connections are becominmg badly broken. Guilt over not providing their every desire instantaneously has no place in our lives--on any count. They can wait until the next trip, the order arrives, we finish whatever we are already doing. Caregiver preservation will allow them much more for longer, than if we flash and burn. Joan, you're on the right track. Kick the guilt to the curb.
I had to do this also. For self preservation!!! I called it putting an emotional wall up between us. It was something I had to do, I was also making myself sick, lots of stomach problems. After doing this for a while, I also realized it was part of the "letting go" process. It was accepting that the disease had won, it had changed "me", there was no way I could be the loving, caring and compassionate wife i always tried to be. I was his caregiver, which is totally different than his wife. With this does come guilt, but soon you will accept that DH is on a journey of his own, and we still have the journey to live a healthy life, and we have to put ourselves "first" to do that to the best of our ability. When we make decisions to do things in our time in order to take care of ourselves, it doesn't hurt our DH at all. There should be no guilt at all, you know that you are doing the best that you can and you should be very proud of yourself. This is a tough job!!!
Joan, I have yet to get there. I also have guilt feelings & sometimes I just can’t get past them, but I am working on it. I am trying to think of ME & do what’s best for me, but like I said it isn’t easy. I must say you have more on your plate than I do, so I am glad that you have lightened your load a bit. carosi, you are so right, it’s just that the catering to my DH was a gradual process & it will take a while to undo that.
Joan..I had to place my DH in a NH 3 years ago. At first I went twice a day ever y day. Just 1/2 mile from home. Over the years I have learned to keep "Me time" I would not go out of town in case the NH needed me. I still love him but I no longer keep myself tied to the NH. At first I felt guilty but I now feel mentally much better. If there is something I really want to do..I go. I still usually see him for a little time about 5 times a week.
FYI - I moved the 'weather' comments to the April Check In discussion.
I am finding this business of transitioning from wife to caregiver and all the emotional baggage that goes with it, including putting my own needs first, is one loooooooong, arduous process.
Joan, So glad you have taken that step to lessen the stress. I have found that now that I have help 3 afternoons a week, mostly so that I can go to PT and other appointments, that i feel much better and am not as stressed. Even though the time away is not physically relaxing it is mentally. I know he is in good hands and that he will survive until I get home.
I have a loooong way to go on the guilt thing--it just grows ,and grows !I do all I can do to try to keep things as normal as possible around here,but IT is NOT normal and it never will be again! I just have to deal better I guess.
I don't know if there is any way to get away from the guilt. And worst of all is we didn't cause any of this and neither did our LO. I notice that now and then my DH gets kind of barky at me...no please or thank you just " turn that down" or " feed the cat" and that is and never has been part of his normal personality. If I give him a certain look then the please comes out or the tone changes to a more normal type.
I feel guilty just thinking at all about the possible need down the road to place him if he becomes a fall risk or his other medical conditions are more than I can manage here at home.
I feel badly when I look at his once handsome face and see the lines of fatigue or the general sense of unwellness.
And I find I question myself all the time about should I take him to the ER or monitor or just what and what if something really bad happens because I didn't take him to the ER but at the same time am I crying wolf at the ER? He has A-fib and of late his BP and HR are out of whack and I call the doctors and they tell me to make sure he hydreates..I am about at the point of putting the garden hose up to him and saying drink this water and not that diet pop with whiskey at 2 in the afternoon. I sense he has no real concept of what time of the day it really is now..It used to be at 5 when he would have his toddy. Now it creeps up to 2 and if I catch him starting that and say something he says he was getting just the soft drink...I think he fills himself up on that to the point his eating anything good is diminished.
By the way, regarding the sweets..I found a fruit drink that we both love it is called NAKED fruit..it has a combination of fruits and it is not quite a smoothy but it is so good and it is one way to get something liquid in him that has nutritional values. Only one word of caution..don't let them drink the whole bottle ( about 15 oz) all at once or the PnP duties might set in.
Joan, is there no day care where you are? I placed my DH in nh just a month ago, but I wouldn't have survived the last year without "my second home" a wonderful day care which picked him up in the morning, and dropped him home at 3:45 in the PM. Without it, I might now be in prison for murder (just kidding). look into it, you need him OUT OF THE HOUSE for at least one or 2 days a week. I started with 2 days, moved to 3, in the end to 4, and the last weeks he was there everyday... that respite (as you already know) is VITAL for your mental health.
There are a couple of problems with Day Care. The first is money. I have zero funds for that, but I am looking into getting it funded. The second is that he just doesn't fit in with the "elderly" later stage people who go to the one in our area. Another one opened up that supposedly caters to moderate stage younger people. I am going to check it out. (He's 68 - considered on the younger side in relation to AD).
You are right - he definitely needs out of the house for more than the one day he gets together with his AD buddies. And I need him out of here for more than one day a week.
I understand what you're saying about the age thing. Amazingly, there were several people (men) at DH's day care who were younger than I am (67). Several had FTD, not only AD, and honestly, I don't really think they notice. the relationships they form are often with the staff. I don't know if Sid is a vet but if so there's aid and attendance which can provide some financial relief. I had a hard time paying it also, but it is absolutely worth whatever sacrifice you can make. you can save by providing your own transportation, and by only having him go 1 or 2 days per week, maybe even half days. the place dick was going was $72 for a full day without transportation, 50 for half day including lunch. It's probably less down there.
After reading many of your blogs that talked about the marriage you and your husband had, and the love you shared, I know that your pre-AD husband would be the first one to tell you take care of yourself now. He would be horrified to see you working until you are exhausted and at the very end of your strength.
Going through some caregiver literature recently, I found one sentence that I'm trying to use as my motto for the rest of my caregiving years: "When you've done all that you can do, STOP!" Too often in past years I got to that point and then tried to do more, and then still more. No wonder I was getting to the end of my health and sanity. Now I'm trying to do more thinking and planning, and less doing. I'm taking better care of myself physically and emotionally. And I'm starting to feel like maybe I won't burn out by this time next month, which is a real change from how things were.
I'll tell you what turned me around, and made me begin to consider placement. I told my daughter, If ever I cannot take care of my personal hygiene needs, I want to be placed. I never want you doing for me what I'm doing for Dick. My wise daughter said, and how do you think he would feel if he knew what you are doing? Jan said it so right, (not that I'm advocating placement) but if he knew how hard things are for you, he wouldn't want you to do it. If not Day care, can you have someone come in especially in light of his mobility problems, you must get help.
I had a long talk with the physical therapist where we live. Sid is starting therapy again for his back - 3 times a week. It's too difficult and time consuming for them to come here with the stimulator machine, hot packs, and whatever else they need to do for him, and the therapist who is doing it is on a tight schedule, so they want me to bring him to them. It's only a 3 minute walk down the path to the ALF, where therapy is located. But the therapist doesn't like the idea of me pushing Sid in his wheelchair because of my shoulder. He feels very strongly that, given Sid's almost year long immobility, and the probability that if he gets on his feet again, he's going to hurt something else, AND his neuropathy that makes it hard for him to walk more than 50 feet anyway, that he should have either a scooter or an electric wheelchair. Although no doctor is going to approve a mobility device for him, to make it easier on ME, he certainly should qualify under his own disabilities, which will make MY life much easier. With an electric wheelchair or scooter, he can have some independence and go to therapy himself. Which will take the pain off of my shoulders - literally. So I'm going to look into that. It's a TWOFER - better for him AND ME.
Joan--to speed things up regarding getting Sid a scooter or power chair--CHECK any agencies he might qualify under, to see if they have loan closets. Many do, and can loan equipment for as long as needed (no or little cost)
Joan, you have made some amazing changes in just a short time! I am glad you are starting to take better care of YOU!
I am sure Sid needs the therapy, but one thought I had was.. could he possibly get a stimulator for home use? I have a TENS and a Neuromuscular stimulator. I just got the Neuromuscular one last week and it has helped me immensely! I do just what the therapists showed me to do, but I do it at home. I use it several times a day, often more. It has been a life saver for me! Maybe once they get him doing better, this could be an option for you?
just a thought. My DW is having trouble walking due to instability and pain. I was able to purchase a used electric scooter chair in a nearly new condition for only $400 dollars through a local online auction. When i looked it up on the internet it sold for over $4000. The chair I purchased works perfectly and she is able to not only get around in it but it is very comfortable to set in for long periods of time. I talked to our PCP about it and his concern is that she at some point may not remember how to use is properly, but I guess we will cross that bridge when we come to it.
We struggled with the decision about a power chair for my husband's aunt (who just turned 100). The trick was that power chairs are not allowed in the nursing home, and Medicare will only pay for one of a power chair, a manual wheelchair, or a scooter every two (?) years. If you get a scooter, consider whether he needs a four wheeled one, which is more stable than a three wheeled one. The aunt broke her pelvis in a fall on the three wheeled scooter when the power door closed too quickly on her.
Thanks for the stimulator idea, but I already have to use an ultrasound machine on Sid's knees every day, and I am NOT adding something else for me to do. I figure that the PT's are getting paid to do PT, so I'm going to let them do it. :)
Carosi,
Thanks for the "loan" idea. The first thing I am going to do is go next door to my neighbor. Her husband has a power scooter, but I think he used an electric wheelchair before he got the scooter. I know she'll let me borrow the wheelchair if she still has it.
I really meant it when I said in the blog that before I do anything now, I first ask - “How can you do it to make it easiest on you?” That is the best test, and it is really working very well.
Joan, that is very true! My thought was it is much easier for me to do mine at home. It is a 3 hour round trip for me to my PT. But yes, YOU would have to do this for Sid and that would just add one more thing to your already over burdened load. I am glad to see you sticking to your guns. <3
Joan, I will reinterate that you should only consider the 4 wheel type chair. My DH had one until he no longer could understand how to operate it. Just like any remote control, or telephone, they WILL forget how to make it go. We'd still go on walks and I'd just walk beside his chair, pushing the joy stick with my left hand. We'd walk slowly, but it was still good to be out and in the fresh air, moving around. He had a Hoverround, made in Sarasota...vs. Scooter store, made in China. Hoverrounds can remove and replace batteries without removing the chair seat..much more "user" friendly.
We were charged about $600 - the difference in what insurance paid and their cost. Most others have told me that they had to pay about the same amount. Never understood why there had to be a difference ... (and yes, we HAD met our Medicare/Secondary insurance deductible.) Did anyone here qualify for an electric chair and NOT have to pay part of the cost out of pocket.