When we were children, we were always told what to do; we longed for the day (age 18) when finally we could say no, I don't want to, and no one could make you do something. This period of making choices and decisions went on into all the phases of adulthood, and we looked forward to retirement, where we could do what we chose to do even more. Unless your spouse became unable to care for himself or herself somewhere along the line.
The 'golden years' have been a return to a loss of control over your life where you don't have a choice anymore. Yes, you DO have to take care of your spouse, unless you are wealthy and can hire it done in your home. Even then, the gradual loss of your loved one is out of your control, making you feel so helpless, imprisoned, and alone.
The cruelest thing is not having to do the care, but not having the person you married, with which to share those 'golden years'.
You hit upon something I haven't really discussed, but has been in my mind quite a bit lately. Do I have to? Not the taking care of him part. I truly feel that I have loved him for so many years that it is a natural progression that I would take care of him. I want to. It's other things. I realize how lucky we are to have such a wonderful support group of friends who socialize. But sometimes I don't feel like socializing; maybe I don't feel like doing what they are doing; maybe I would rather stay home and read a book; maybe I would rather do something else. But I always go, because my husband craves and needs the socialization.
I guess I figure if I live through this disease, I'll be alone, and will be able to do whatever I want whenever I want. Some trade off. I want my husband healthy and alive to grow old with. I'm not going to get it.
Yeah, not the way we expected things to go as we grow older, is it?
By 'having' to give care I meant what you said, that it is our love that 'makes' us do it. We don't have any choice. It's not someone else saying you must, it is our own hearts. It's just that I get tired of the 24/7 responsibility, and would just once like to say I'm too tired, and let somebody else do it this time.
Last fall I was in the hospital for an angioplasty. They kept me 2 nights. His kids and my kids teamed up and took care of him for two days and nights. Best nights' sleep I had in months and months.
Joan, I can detect another blog brewing in your mind. I think we all can relate to the feeling of "do I have to?" Like Texas Joe pointed out, we're back to having someone else tell us what we can and can't do. There are so many things I'm missing because I "have to" do everything for DH. I do love him dearly and want to take care of him but I sure wish I didn't "have to".
This is so on target for me toooo. For some reason (maybe I'm just tired) its just been harder this week, than the general difficulty of things that make no sense.
I responded to the tunnel topic and was too longwinded. It was best to let those remarks evaporate.. I won't type much more other than to say, I'm so thankful for all of you and a message I received from my daughter who has been most involved and has visited most often. She said "Mom, you don't have to do this'. What a blessing to hear those words.
I have been feeling guilty about thinking how nice it would be to just turn everything over to someone else for a day or two and get away from it all. I used to play golf once or twice a week but haven't played in over two years now. For some reason I haven't been able to let someone come in and stay with her while I play. I am thinking seriously about finally getting someone every once in awhile so I can go play. I hope my concious ?? will let me enjoy it.
I know the feeling,I lived to fish an hunt,havn't done either in the last two years,have to wonder when I cut the grass what "surprise" I'll find in the house when I'm done,she has four boys who seem to forget the sacrifices she made for them for so many years,will be interresting to see how Mothers Day turns out sometimes a couple never even send a card
All of you need to "heed the need" for respite, a break, an escape or whatever you want to call it. I know it is hard to leave your husband or wife....we all feel that we are the only ones who can handle their care....but, as I have said before.....the caregiver does not have the disease....we did not cause our LO to have the disease, and we can't fix it. What we can do is to maintain our sanity and that involves letting someone else take over once in a while.
I wish the word guilt could be wiped off the face of AD caregiving. Why should any of us feel guilty about enjoying ourselves? Some day you will be alone and it is going to be easier for you to start your new life if you have maintained contact with the "real" world. The world of AD is not real.....it is all consuming and therein lies the problem. If we are drowning in the day to day care we forget that there is something else "out there".
I knew that I "didn't have to do it" and that was my salvation. When times got unbearable and I felt like I was going nuts...I found a facility for my husband to live in for three years until I could take over his care again. I also hired people to come in and care for him so I could travel and still maintain a life in the outside world once he was back home. I also had to disconnect myself from the husband/wife relationship.....that was over....I became his protector and advocate. Was it easy, hell no! Was it necessary....you betcha!
I had no problem entering the world of the "living" once he died. I had never really left it.....it takes work....please don't become another victim. You are all too important to me....
That is good advice, Sandi, but I'm not quite ready for it yet. When I had my last colonoscopy (3 yrs ago), I put DW in a NH for one day and night 'cause the prep is so God-awful. When my son and I went to pick her up the next afternoon, she was sitting up in bed with the lunch tray in front of her, and her lunch upchucked all over her chest. She is an aspiration risk, needing nectar-thick fluids, and when I saw that I couldn't believe it. Where were the people to watch her and clean her up? I was so mad I don't remember what I did next. All I know is I wanted to get her out of there as fast as possible. That's why nobody can care for her like I can.
Joe, I know that's what you think, and it's what I think too - my husband knows how to get around his house, etc, but how would he do in a facility? But do try bringing someone else in from time to time. Learning to trust others is important. Do you go to any kind of support group where someone could recommend someone they've used? Just for one half of day... then one day a week if it works..
It's just like having kids and being afraid to have a baby-sitter in. It's scary, no question about it, but the flat truth of it is you can not protect kids from everything for all of their lives. And for her, being used to having someone around, and having someone used to caring for her, is important for emergencies, if nothing else.
Please don't become like those women who say "I gave up my life for my...[children, husband] and nobody appreciates it."
I have had my daughter and friends in to sit with her, briegull, but it was only an hour or two for me to grocery shop or go to the dentist or dr. She needs Depends changing every 3-4 hours, so I guess I could just leave her in bed, and not be gone for more than 3 hours. But that means the sitter needs to be able to schedule 3 hrs., and that is not very likely that a friend or my daughter could or would do that. I would need to hire a professional for that, and no, I don't go to any support group (because of what I just said) to get a recommendation. Kind of a Catch-22. Next colonoscopy (in 2 yrs) I could hire a private nurse to supervise her in a NH during mealtimes.
TexasJoe--I second briegull. Further, keep in mind, if you arrange someone to come in you can set the schedule so meals are not an issue, until you know the aide is competent and reliable. It is vital for both of you to have you DW used to having someone else doing some of her care, or at least in the home some of the time. Heaven forbid something happen to you, but if it did, your DW would be in a world of trouble dealing with strangers and they could easily make mistakes in her care like you've already witnessed. I don't even want to think of the potential problems and care issues that could happen in that case. Think of it also as a way for you to recharge a little, while she gets the stimulation of someone else to be around. On your own turf, with your schedule, doing what you want/need done. Try it.
TexasJoe-- Call your Area Agency on Ageing. See what they can do to help you find qualified help. You can schedule the time you need. Some programs are available for respite, some for personal care or in-home help. Some programs have sliding fee scales, some are out of pocket. The Agency ob Ageing can give you a list of Companies whichprovide care. You can keep control of what kind of help you want, when, for how long, to do what. There are ways, and it's worth the effort to do this.
carosi, the problem I have with that is not wanting to leave strangers alone in the house. 'Strangers' from our church are o.k., but from the general population (bonded or not)? Call me paranoid, and I probably am, but it's o.k. for anyone else to be in the house helping out while I am there. Lord knows we've been there and done that - about 4 home health agency nurses and aides after hospital stays over the last 5 years. I know! I'll just clone myself, and problem solved.
Thinking of having strangers caring for DH (especially if something suddenly happens to me), I’m working on a “caregiver manual” that covers everything I can think of, like foods DH is allergic to, things that drive him crazy, meds he takes, all the notes on his other medical conditions, etc. Our first day on Meals on Wheels, he got a dish of something that would have sent him to the emergency room with an allergic reaction. Who else knows all the little tidbits of information about our loved one like we do?
We are working on getting our first assistance at home, for maybe one afternoon a week. This is so I can get out and get to the grocery store and all those other errands that one has to do. So that will be my long-awaited “respite”. I am going to have to get very well acquainted with the caregiver, though, before I will leave DH alone with them.
Jan, that is a very good idea. I have notes made on my computer about various things, but I really need to add to it and make it into a little booklet or something that someone else can see/read. No one would know where to find it on my computer.
A respite caregivers mai focus is care of your LO, keeping thm company, preparing a meal (in your case, Jank, serving what you've prepared). If your LO naps, they might do some light housekeeping, but the reason they are there is to look ot for your LO. An in-home worker will keep an eye on your LO, but will be doing other i-home chores as well. Neither will administer meds. They will remind your LO to take them but they do not dispense or administer them. Jan the manual is a good idea. nyt caregiver who must lookjout for your DH will have a much easier time doing their job and your DH will have much better care becaus you've clued them in.
Remember when there was the Caretaker of the Office, the Secretary, who knew the files and where everything was and heaven help anyone, boss or underling, who tried to find something without her - SHE knew the file system, nobody else. Then there was the Computer Guru, who knew How The Computer Works and was the only one who could talk to the Great God Mainframe. (very funny cartoon, Shoe, had the Wizard who knew everything about computers). THEN CAME DOCUMENTATION! because very smart people got very tired of the ONE person knowing EVERYTHING about how things worked. When I retired, in 1997, I made sure that everything in my very wide (but shallow) purview at Brown was documented to a fair-thee-well. And since I've retired, long before my husband became incompetent to do stuff himself, I documented everything my husbanhd needed to know before I went off on one of my trips. I also document all kinds of things for myself, because I do not trust me to remember how to do stuff I do once a year.
Our mothers wrote down recipes. This is the same thing. DOCUMENT! and then you'll feel more comfortable leaving attentions to your spouse to others.
I put DH's emergency information/health ins.cards etc. in a specific location when I had to be away..but its true there is much more to KNOW if someone who doesn't really KNOW him, comes in to help. Yikes. Food preparation, Meds, Clothes, Shower issues (leaves water running after a shower), Space heaters etc..
Things that our family members are well aware of outside and inside the home need to be listed in the 'recipe' which has changing ingredients. We could create the document, keep it in the computer..make changes and print as needed. Good ideas for sure.
That's what I've done. I've also taken a picture of his breakfast laid out before he gets there; he eats the same thing every morning. It's on the fridge. I'm hoping to be away for about ten days this July; my daughter will be home but working full time and we'll have caregivers in on a daily basis. I'm thinking that before I go I'll have the visiting nurses informed, as well as all the forms in the expected place. The caregivers come from the agency I've been using for a year so they're accustomed to his needs, but I need to fill in a lot more; things have changed in the past year since I last went away.