My week of respite is over, and I have written a blog about what the week taught me - I have reached my limit. I invite you to log onto the home page - www.thealzheimerspouse.com - and read the blog.
Please post comments here - especially those of you without help. Your limit seems so much higher than mine. I wish I had more stamina, but I don't.
My husband has been deceased for almost 2.5 years now. I still read your blogs and can totally relate to where you are. With the benefit of hindsight and reflection, I now realize that I waited longer than I should have to place my husband in a long-term care facility. I was doing a lot of research/homework, knowing that it would eventually reach that point, but had to have a full-blown crisis before I finally did something. As I recently told a friend dealing with a similar situation, 'there are no good solutions, only ones that are more workable than others.'
I hope you find a workable solution for your situation.
Joan, I hope you can find the solution for YOU. It certainly is hard for us who have no help. My situation is not nearly as trying as yours, though. But sometimes I feel like I'm about to drop off the cliff. I can only imagine how you feel.
I have that same question Joan--how do some of our compatriots here manage without help? Anyway, good for you...you MUST take your own pulse, so to speak. Don't back down.
Emily, it isn't a piece of cake, believe me! However, unlike Joan, I do not have to "wait on" DH for most things. He pretty much entertains himself with games on computer, replacing batteries in flashlights, unloading dishwasher, setting the table, clearing the table. Of course, I can never find anything. He showers, somewhat, I shave him. I lay out his clothes, but he can dress himself most days. His walking is getting much worse and that worries me, as he's fallen a few times. I leave him alone for 1-2 hours a couple days a week, while I go in to work, just 2 blocks from our house - but now he can't use the phone to call me and can't use the alert button anymore either. He kept playing with it and setting it off! He fixes his cereal for breakfast, sandwich and fruit for lunch. No stove or microwave though. He does not wander. His short term memory is less than 3 minutes, and we play 100 questions all day long. Not incontinent! But....here I am, stuck in the house or yard. On the other hand, even if someone came to stay with him - I don't have a clue what I would do! I've pretty much dug in for the duration, I guess.
From the start, I never knew how you did so much. I have always been the only low-energy female in the family, but I hung in with far less to do than those who have LO's w/other problems--like diabetes for Sid, elderly parents like you, or children still at home. From time to time I'd have someone for a few hours, but it was still just me, me, me 24/7. After 10 yrs I felt the cells in my body all slamming into each other--enough was enough--and also I went from 63 to 73. Don't underestimate normal aging on top of unending mental, physical and emotional stress. As jh says above, I too waited too long to place DH for MY own well-being. With our SS, our IRA's and renting rooms to students in our home, I managed to do it. I know that's more than many others may have, but it wasn't just the finances, I just didn't want to do it--but these ol' bones said otherwise. I hope you find a way.
Well, yes, I do know that Vickie. I guess I was "lucky"? in the fact that Jeff went so rapidly from the type of caregiving you're doing to higher-needs. Hence, I was more or less shocked into finding help rapidly rather than letting it get heavier and heavier until I got smushed. I guess I figure I paid my dues over the last 8 or so years, then the bottom fell out. (You're very right. It wasn't cake.)
Vickie...it sounds like your dh is progressing very slowly which helps. Two years ago I could go out for maybe an hour or so without him, and he could fix his lunch, he could work the mircro and entertain himself with his word searchs and even do some minor games on his computer. Now...that is all gone an he can't do any of those things nor make a phone call if he needed help. The visiting nurse was just here today and has ordered a walker and wheel chair for him. This is going to be something trying to get him to use the walker.
Joan, Most people here have only one loved one to care for and I really do not know how you have kept everything together this long while caring for both your spouse and your father at the same time. You are a miracle worker to have survived this long without respite. Very soon you are going to have to start doing a better job of caring for you because you are to precious to lose. God Bless Bruce D *
In the beginning, I cried all of the time. Sobbed and sobbed and sobbed. I don't cry anymore. Probably because I've built such a big wall around my heart so I can keep doing the things that need doing. But last week, my sister and I had a long honest discussion about what the future holds and how to handle it. I wrote a long e-mail to my son (who lives 3000 miles away) about the whole situation that I wrote about in the blog. (He is on top of things, and is totally aware of what is going on). His response made me cry. His support for me and my decisions, as well as his honest assessment of me and my needs relieved so much of my stress.
Tomorrow (fingers crossed) I don't have to go anywhere except next door to see my father. The day is going to be spent researching resources - on the phone, not online.
If I remember the last time your sister visited she said it was time. You were hoping day care would give you the breaks you needed, but Sid is high maintenance and add the needs of your dad, where does Joan get taken care of? Will be praying that you find the solution quickly. Either in home help or placement seems to be what is needed - for you.
Oh Joan, I know this must be so hard for you. I've always said I couldn't place my DH as long as he still knows me and is aware of where he is but sometimes we're just so worn down that we have to do something. Could more days in daycare work for now?
Vickie, your posts always seem to amaze me. You seem so good-natured, calm, and handle everything well. Of course, your hubby seems rather even-tempered for an AD patient (compared to mine in earlier days), but my hat is off to you!
Thanks, Marilyn. I think I have been to H*** and back, with the loss of my mother, then my son within 2 months of each other. With all I had to do over the last two years, I look back on it and wonder how I survived. But I did, and I will. DH gave me so much before AD struck - and he took care of his first wife who died from MS. I know he would do the same for me. And, yes, he is even tempered most of the time - he only gets frustrated at himself - never at me - and what's worse is, he KNOWS he is getting worse and worries about me. Now he doesn't even recognize our home, our bedroom, etc., hallucinations, delusions.
You must be made of iron. I think what makes me feel so badly for dh is his inability to really express himself. Three weeks ago the delusions and hallucinations were getting very serious but doctor put him on Paxil which has helped tremendously. I can even double up on the dosage if necessary. He doesn't know what Alz is or that he has it. One day he said he thought he was going crazy and I said it happens as we age and we just have to compensate for it. I think he bought it. My son is coming with his family in July and I know the change in his dad will astound him. I keep him informed but they have to see it to believe it.
We are a strong bunch and really exemplify the word LOVE. Without it none of us would be up to this journey of physical and mental exhaustion.
Sometimes I feel so sorry for myself and I come on this site and just read the encouraging words of others and it really helps me to forge on. No one is going to thank us for this but in our hearts and minds we will all know we did what we were meant to do.
My limit was reached four weeks ago. H had fallen twice that day; the falling had increased during the previous several weeks. I could not leave him on the floor for several hours. He cursed me then, and has since cursed me for calling the paramedics who transported him from here to the hospital, to snf and now he is going to be transferred to an alf.
I did it alone with no help, no respite for 18 months which may not sound like all that much to some here. But included in those 18 months was rage that included telling me "I will make you disappear and you will never know when it is coming..." The more I did for him the more rage he showed.
The morning after he was transported I awoke to the sound of cats purring and birds singing. No screaming, no slamming of doors, no yelling. It has been that way for the four weeks now. A few days after his transport I looked at my legs and said "what?!" Massive hematomas was what, from the week or so before he left when he kicked and pushed at me when I was trying to lift him from lying down to at least sitting.
Of course, it was not his fault, it was the disease that made him lash out at me in that frustration. Of course.
He curses what I have let happen to him and how can I dispute that?
Of course you can dispute that you had anything to do with him getting this terrible condition. Don't ever blame yourself. Never...never. You have cared for him the best you could and with more courage then most of would have. I could never, never do what you have done. You will some day have very special dust on your wings.
Joan, of all the things you've written since I've come to this site nearly 3 years ago, it took this posting to make me feel upset at you. I'm upset that you wrote that you feel inadequate. Are you kidding me??!! You have been an amazing caregiver and should not feel this way. You have done more than most would be able to do in your situation, and the fact that you realize you have 'reached your limits' and need to search for a better solution in no way should imply that you have been inadequate. So stop thinking that way!!!
Vickie--I know the multiple losses make it harder. During the last 9 years, I have lost both my parents and Steve was dx. Not the best decade of my life, to say the least!
Abby--I have been wondering about you. How is your husband progressing? And how are you doing emotionally?
The reason I used the term "inadequate" is because I read all of the time on these boards of women and men 10-15 years older than me who are washing, showering, dressing, feeding, and changing diapers for their spouses. They spend their entire day doing the phsyical work of caregiving. I can't do it - either physically or mentally. ( He doesn't need feeding or diaper changing yet, but he surely needs help dressing and showering) I just can't give up my entire life like that, particularly because I'm trying to work from home to bring in some income. The more time I spend tending to Sid's needs, the less time I have to work, so I'm stressed from both ends.
Well, I have to go over to the ALF to bring my father his supplies, but after that, today is going to be spent on the phone with the social worker and case manager. Somewhere on another thread, JudithKB wrote about getting a hospice evaluation. Not a "dying now" Hospice eval., but an eval. to see what help she could get, and they provided her with 3 days a week of showering assistance. They did this because her husband was going to be in need of a wheelchair and walker "soon", and was unsteady walking. Well, Medicare approved a wheelchair for Sid; he is unable to stand unaided; he can barely put one foot in front of the other to walk with a walker in the house; his legs are weak from neuropathy and AD; and he can't feel the bottom of his feet. If that doesn't qualify him for help, I don't know what does.
Oh, Abby what a hell, I am sorry. I don't know how you did it for so long, really I don't. The AFL where they are sending him what kind of place is it ? And what meds are they using for his combative behavior? When I watch that behavior in my hubby I say, "if there was no disease, I'd be gone....this is abusive spousal behavior" Ok, I too know it's the disease but and a big BUT how much Ativan can you give one person in a day? I leave on Friday for my respite and I pray my sister doesn't hate me when I return......I am running out the door on Friday and not looking back until tuesday. I went to a AFL on Friday and taking the anger/aggressive behavior out he's not ready for it. And the truth is I am not ready either ......as long as I feel safe.
Joan, I hear you, but if there's one thing you've taught all of us, it's that we each can only do what each of us can do, and despite the fact that we're all paddling our boats in Lake Alzheimer's, each boat is different. Each of our AD spouses and each of us as caregivers have different needs. This comes up in my weekly support group all the time. I'm lucky; my wife and I have long term health care policies, and whereas some in my weekly group have been caregiving unbelievably at home with little or no assistance ... just as many on this site have been doing with high need AD spouses ... I have said to my support group that I know I couldn't do what some of them have been doing. In fact, my wife and I even discussed this issue several years ago and are both at peace with the knowledge that she will go into an ALF when I reach my caregiving limit. And that will happen with sadness that my wife has reached the stage where I do not feel able to provide care ... but with no apologies or feelings of inadequacy. Presently, I am still very lucky. Although her reasoning button is completely broken and her short term memory totally gone, and each day is 'Groundhog Day' hell as she asks me the same questions over and over, Clare and I can still go out to eat (although by the time we reach the parking lot she has forgotten where we ate or what she ate), still hold hands and watch TV together (although she often doesn't know what show we're watching). I am with her 24/7 except for two 3 hour respite periods a week. She's fallen four times in the past year, plus has major heart issues, so even though she hasn't wandered (yet?), I cannot leave her alone. And although some days are incredibly frustrating, she sleeps so much that I use her sleep time as my 'me time' and between daily logs and writing articles for publication and emailing special friends, I have managed to maintain my sanity and as yet feel no need to hire someone to give me more time out of the house by myself. BUT, when that time does arrive, I will do what needs doing without feeling inadequate because I will have done all I could do ... and more than that I cannot do. And, Joan ... more than that you cannot do, either ... so please do not feel that you are inadequate. You most certainly are not!!
Joan....One of the reasons I think the Visiting Nurses recommended to Hospice that there should be an evaluation of my dh was because they really caught be at a bad time. I could hardly get a few words out about my dh and I was crying. They couldn't use my depression and mental condition as a reason to have him evaluated by Hospice, but I do think they personally took that into consideration and maybe even bent the rules a little. They recognized I wouldn't be able to continue this routine much longer and they were right. So...if you can...don't hold back your feelings and how stressed and in need of this type evaluation you are...let it all hang out so to speak.
Joan, This blog really touched me. The having to do everything for a person is very difficult and tiring. My husband can still shower with cues from me to make sure he washes everything and dress himself. I have to shave him but since he has a full beard it's not that hard since only his cheeks and neck need to be done.
I'm lucky that my husband goes to day care 3 days a week. It's a 30 minute drive each way but I couldn't do without it. During that time I use one day to run errands, one day to help my parents and grandmother and one day for me. My husband doesn't speak anymore and that is what I find the most difficult. He can't tell me other than by his behaviors, if he is hungry, cold, hurting, etc. What I wouldn't give to have any type of conversation with him...
Joan I very much appreciated your blog, and can really see what a huge load you have been carrying. I am rooting for you here, and am looking forward to hearing about a solution to your way too much burden. I am sure, that Sid knows how much you love him, even if he does hate what is happening to him.
Joan, You run this wonderful site for us, knit for income, take care of your DH full time and your father. You are doing a boat load of work! We all can only do so much. Don't be hard on yourself, and remember as well "If you have seen one Alzheimer patient, you have seen one Alzheimer patient." I think the same could be said for " If you have seen one Alzheimer caregiver, you have seen one Alzheimer caregiver." We all work as hard as we can for as long as we can. No two caregivers life is the same.
Hi Everyone, I haven't been here for a while to read but this blog really touched exactly where I am right now. I have spent the last two days crying. I took a respite weekend last weekend and whet out of town, my daughter and grandkids helped with my husband. He is angry, more confused than ever but does have moments when he makes total sense. He needs lots of cues to function, had no short term memory, and absolutely cannot follow even the most basic instructions. I took him to a Day Care that one of our local nursing runs. He hated it and said they didn't have enough for him to do. I work full time as a Director of Nursing for our county Health Department and I was going to retire in June and stay home to take total care of him. I am 64 and he is 84. I realize now that I cannot do this. I would lose my mind first and then what would he do.
So, I am meeting this week with our Regional Community Care Intake Coordinator. He is coming to the house to do an assessment. I had already moved most assests into my name last year and that might give my husband a chance to qualify for Medicaid. If he does, I will be able to have help that will not require me selling things to pay for this. I have to have relief. I keep thinking that he isn't bad enough...but, how bad is bad enough? It is different for us all I would think. I battle a physical rheumatoid condition and there are days I can barely walk, let alone care the way I should.
There are days when he tries to blame me for everything, He is mad all the time about something and I find that I want to just blow up at him. I am talking in circles. I just can't seem to concentrate on anything right now, my husband, work, the house...it is all a mess and I just want to cry.
Machonnold The glory of this site is that it is a place of comfort and understanding. You are not alone. Giving up a job you enjoy to stay home with your husband and do battle might not work for you. If you are not under constant stress your own health might improve. I hope the home assessment goes well.