6 mo into husband dx w lbd but a year and half of worry. I Initially thought I would do everything till the end. Now not so sure. I'm reading posts of caretakers doing this for 11 yrs ! I'm already so tired and nervous. I want to do do my very best for him. I'm having doubts. My hubby still so good I can leave him for a couple hrs. Alone he can do everything for himself. It's the future that makes me physically sick. I hate admiting but I hope this goes fast. I Know he would hate having his body and mind fail him. I'm wondering if we should even go to cardiologist apt. He has a stent. Just so confused. If I'm being honest Im a little envious when somebody's spouse dies. I know that's horrible. I feel terrible. Yes I love him deeply he's amazing married 35 yrs. Is this normal ? Maybe it's early stage dread ?
Onewife, I too felt envious when somebody's spouse passed. At the time I felt horrible about that, but now that he has passed, I know it was pretty much a normal thing. It is only normal and natural that we want the end of this nightmare. It has been said several times on this website that the time to place is when the caregiver is ready and does not want to do this anymore. It really has nothing to do with the patient, and only you can answer that question. I placed my husband 5 years after the diagnosis and he could still do quite a bit by himself, but gradually he was unable to use a phone and then leaving him caused greater anxiety for me because I worried that something might happen and he would not know what to do or else go somewhere and get lost looking for help. Try to just take one day at a time instead of looking too far ahead. Yes all that you are feeling and experiencing is absolutely normal. Those of us who have completed the journey as well as others are all here for you.
Mine passed two years ago, after 10 years of caregiving, and I relate to everything you say. I too began to wish for speed, and feel that twinge of envy when someone else lost a spouse. Don't feel guilty about it. Different ones of us have and have had different ways of emotionally coping. Some truly want to hang on to the last vestiges of what remains of their spouses with AD. Others (including me,) found enduring the deterioration so difficult that we did wish for it to be over. Neither way implies anything about the degree to which we love our spouses.
As for your question about the cardiologist. Only you can answer that. I can only say that my approach would have been to take health-preserving medical measures during the time that I still felt he was enjoying some decent quality of life. At a point when he could do so little that life seemed (based on my understanding of who he was, and what he would want,) less meaningful, I would have declined life sustaining medical procedures, unless they were needed for his immediate comfort. Palliative care I guess you would call it.
Honestly though, if it were I, and I were in the beginning stages of dementia...and I had a cardiological problem that needed monitoring to minimize the chance that it would kill me...I'd rather let it go. Because I'd rather die precipitously than linger into AD.
Onewife, My husband was diagnosed 8 years ago. Here is my advice.
Since guilt saps your energy and clouds your thinking, do not go seeking it out when it's not warranted. Specifically, be on guard against feeling guilty about what you are thinking (as opposed to what you are doing). Most people in our situation come up with bizarre and troubling scenarios about our spouses' deaths. Recognize that such thoughts are just a way of coping with our desperation. So go ahead and think these thoughts, then recognize them for what they are, and let them pass by, as though they are clouds. Save your guilt for things you actually do, rather things you think.
Since your husband was only diagnosed 6 months ago and he can still do everything for himself, I question why you would cancel his cardiology appointment. It sounds like he still has a few good years in him. Most of us hope our spouses will not linger on in a helpless state, but if you are trying to end your husband's life early and painlessly, you are making a lot of unfounded assumptions. Ignoring a check-up on a stent will not necessarily cause your husband to die precipitously. It might actually cause him to linger on in an even more helpless state.
Since your husband is in the early stages, I would try to find things you can do together while you are still able to. If there is a trip the two of you have wanted to take, then take it. Or if there are people you have wanted to visit, then go now. Or if there is a premium cable channel your husband has wanted to subscribe to, then get it. Now is your chance. My husband had always talked about going to Florida in March to see some baseball spring training games. After he was diagnosed, I arranged for such trips for several years, even though we could not afford it. (I put it on a credit card.) We had a great time and it was the best money we ever spent. My only regret is not having done more things like that.
Onewife - it has been 7 years already and he shows no signs of progressing very fast. His sister died after 9 years but his dad went 25 years. I dread the thought of that. I am so tired of this, tired of my life being just existing for his benefit. There are days when I see no end in sight and think of ending it for both of us. Then there are days where I pick myself up, dream about a post AD future and go on. I am just so tired of this, tired of no life really, tired of it all. He is no where close enough for placement especially since I will rely on Medicaid.
I dread coming to this sight, yet can't keep away, because seems almost every day (I know it is not that often) someone has lost their spouse. Or seems the threads all deal with those who have placed their spouse. I get angry and envious because I so wish it had been my hb instead of theirs. Even more so when it is spouses who had good marriages and so want to hold on to their spouse. LIke a parent whose child dies and they say 'I would trade places with them if I could', I would gladly trade situations with those who lost their spouse so they could have their spouse back.
I can leave mine although he hates to be left behind. With the surgery I had done a year ago, it was more stressful making sure he had someone near in case he got scared and if something happened to me, things were in order. When I had the colonoscopy the first of the month, because of sedation or the slight chance of something happening so I had to stay the night, again the stress of covering all the angles was more stressful than the procedure.
Last week he didn't take his morning pills which included the galantamine. I noticed no difference. I have talked about stopping it so if it is helping him to stay cognitively functioning longer, it would stop - he would go downhill and placement will come sooner. His primary knows I would not treat any condition that came up (like cancer), so doesn't even suggest things like colonoscopy and such. If he had a heart condition, from our talks when he was first diagnosed, he would not want to be treated for it especially if it is a condition that will take him before AD does.
Thanks for this thread. This is the most I have seen people admit they are envious it was not their's when someone else's spouse dies.
I think Myrtle's advice is very wise. Especially the part about saving your guilt for things you do, rather than things you think. That saved me when I was shutting off from emotion in order to power through what needed to be done. I worried that not wallowing in the sadness maybe showed me to be a less compassionate person than some...but the truth is I did everything that had to be done, with patience and kindness (well...as much as I could muster,) and that was compassion, regardless of how emotionally shut down I felt, or how much I wanted it to be over.
Charlotte, I remember you mentioned your husband got care from the VA so I know he is a vet. I was wondering if your state has a veteran's home. I'm not talking about a federal VA hospital - I mean a residence owned and operated by the state. My husband is in one of the two veterans' homes run by our state and those facilities house people with different levels of disabilities. The facility that my husband is in has care levels that range from hospice to a dormitory unit (for people who for one reason or another cannot live on their own in the community). The cost of room and board can usually be covered by what the person gets for social security. The only problem is that the place is so popular that there is a one-year waiting list. If your state has that option, maybe your husband could be admitted many years before he needs care at the nursing home level.
I can understand how desperate you must be but I hate to hear you say that you sometimes think of ending it for the both of you. There has got to be a better solution.
I too, wondered how I would deal with the future. We had about 7 years from the time I first realized there was a problem. There was a thread some months (years?) ago that was titled : Where is your line in the sand. I figured my line was when I hurt my back so that I could not physically take care of him. When he got to the stage where I could not leave him alone I hired a person to come in for 3 hours a week. I told him she was coming to help me. After a few months I hired a second person for a different day. Just having the freedom to get out of the house a couple days a week made a big difference in my attitude.
And yes, I certainly hoped it would go fast once I had accepted the fact that it was a terminal illness. I did manage to keep him at home until the end. He was on hospice and totally bedridden for the last 10 months. At least he couldn't get into trouble those last few months.
I have been on the sight for a few months but have only posted a couple of times. Seems like when I think about it so may feelings and emotions don't know where to start. Myrtle's comment about guilt is right on. I dread the future wonder if I can cope think about placing Dw at some point we are currently early stage 6 I think and certainly not anywhere near placement still having many good days. When I have those thoughts and think about life after all feel guilty. Last summer docs said 5 verging on 6 but so hard to judge. Today had atalk with a friend and mentioned that at some point I know I will have to place Dw. He had just watched still Alice and said well don't place too soon maybe get love in help. I was just trying to be realistic and it made me try and justify my comment didn't like that.
I am going to start with getting some respite time so far I have had no help. I have it lined up but the Problem dear wife apposed, I tried to have a conversation about it again the other day, stupid. I know better but again the feelings why did I do that I know better but cannot seem to get myself past the point of just saying this is right, it is needed and it does not matter how she feels about it right now.
Also been thinking about the comments made about the meds. We have been on aricept,galatamine, and the excelon patch, none seem to have made any difference. Should we continue feel guilty about even asking the question am I trying to speed it up. So many emotions and no real right answers.
Rona, if it makes you feel any better I ask his primary care to stop the Excelon patch probably about 8-10 months before he passed. The first time I asked her she said no but the second time she agreed. I could see no difference and yes I was trying to speed it up and I believe his doctor knew and agreed. Once he was on hospice they stopped his inhalers and kept only the blood pressure medications and then the psychiatric drugs he was prescribed. I too felt as you when my DH was stage 5-6 that it was going so slow but that was about the time I considered placement. I placed him not because of the physical toll but the emotional toll it was taking on me. I believe the emotional toll at least in my case was much worse than the physical difficulties. It is very difficult to measure the emotional toll because it is silent but in my case was reflected in my frustration, anger and zero patience in trying to deal with him each day and still preserve my sanity. I first placed him in respite 2 summers ago and went on a vacation. Highly recommend respite as it will give you a breather and can then pave the way for the next step. Thanks for sharing
Rona - I am sure that your friend meant well, BUT if he is basing his advice of "Don't place too soon maybe get live in help" from watching a movie, you need to purge that comment from your head.
No one, absolutely no one, who has not had an AD spouse at home can know what it is like.
I think you were hoping for some validation that when the time came to place your wife you would be doing the best thing for both of you. Here is your validation, Rona. Right here on this website. You are in charge, you have to make the decisions now and whatever you decide has to be the best thing for YOU which will ultimately be the best thing for your wife.
Placement only means that you have 24/7 help. Your worry, your work, your advocacy doesn't end. You will be able to get a good night's sleep, which is good, because there are always so many issues to deal with, even with placement.
I don't think that discontinuing the meds speeds up the disease itself. The meds mask the symptoms for a short period of time in some people. My husband was sick all the time on the meds and I was glad to discontinue them and I don't think discontinuing them accelerated the disease itself.
Time to kick that guilt out of the house. Remember, what is right for you will be right for your wife. You have to stay healthy to manage this whole situation.
Rona, if you are wondering if it is the right time to place, read the thread called "Struggling" which I started a while back.
I got a lot of good advice there, but the bottom line is only you can determine when is the proper time to place. My DH has been going to respite (one week each month) for the last 8 months. He didn't like the idea at first, but I flat out told him that I needed the rest, and if he didn't go I wouldn't be able to keep him at home.
DH is to be placed next week. In the 8 months since he first went for respite, he has deteriorated. I like to think that the respite did what I wanted for those 8 months - it gave me enough of a breather each month that I could cope with him at home the rest of the month. It also had the added benefit of showing him that others could care for him as well - he didn't need to rely on me, he was still safe and well cared for, and i think it has helped ease the decision for both of us that it is now time for him to be in a care facility full time.
What marche says is right -what is right for you is right for your wife. Because you do need to stay healthy in order to manage not only the current situation, but the future as well.
Marche - you are right that the drugs have only proven to allow them to stay cognitively functioning longer - if they work which in the dementia online class I took from Tazmania University they say 30% - while the disease rages on. Tonight I went to the support group I went to I think in February. The guy leading the group, whose wife died from AD, kept saying the drugs slow the disease down. I did not correct him cause he is the type that does not take correction easily - or doesn't seem to. The class was better tonight - 2 hours of support.
Myrtle - there are only 2 dementia state run dementia facilities in the whole state. They are suppose to be building another one in Walla Walla, about 1 1/2 hours away but who knows when that will happen. I do have the name of the guy to contact with the VA which I got from the case worker at Aging and Long Term Care. Just have been procrastinating.
I waited to long to place, as I know a lot of people feel that way. I let others in DH's family effect my decision. But none of them were helping me. The thing was DH looked good. All me! Of course he could do nothing for himself. The place he lives now told his family that he had not declined more because of placement, they were seeing a person who was WELL cared for at home. He is taken care of at the memory care, just not always neatly shaven or hair comb the right way. They are visiting him more there than they did before. So they are seeing more AD. The only thing was I didn't look that great. It has been hard, only 2 months now. I to wish that he would pass, and am envious when someone else's spouse does. I know when it happens though I will have another pain and grief.
Charlotte, I'm concerned about you. You really need a break from your husband, especially since he is progressing so slowly. Ask the guy at the VA about Home and Community-Based Services, which are described at www.va.gov/GERIATRICS/Guide/LongTermCare/Home_and_Community_Based_Services.asp. These include Respite Care (inpatient and outpatient), Adult Day Health Care, and Home Health Aide Care. These services are all available to veterans whose caregiver is experiencing a burden. I used the Adult Day Care services for 2 years and the Home Health Aide services for a year and they saved my sanity.
Also, is there some reason why your husband could not be admitted to one of the two state-run dementia facilities? Or are they too far away from where you live?
Thanks everyone There is difference between knowing what should be done and acting on what should be done. Feel like I have been trying to run away from alz for a long time. We travelled a lot this winter which worked out well but I dreaded coming home as I knew changes had to be made. Well that time is here not placement but just help for me in the home. It is lined up now I need to act.
I am also going to tAlk to the doc about meds. At this stage is it worth it? A question Dw has had sores that appear usually in the same spots, chin mostly, then out of no where will start to bleed wondering if side effect or caused by alz? Have asked doc been given ointment but no help. Dw very upset about this and hard to keep her from picking at them, this however not the cause of the sudden bleeding. Sorry if this is off topic.
Rona, The drugs that are given to Alzheimer's patients are in many cases ineffective and just cause side effects. I don't know why anyone would feel guilty about discontinuing them.
Many people are resistant to having someone "come into the house." If they are caregivers, they may prefer to maintain their privacy even though their own health or the health of other family members deteriorates under the burden. If they are Alzheimer's patients, they may not understand the need for help or they, too, might be unconcerned about the health of their caregivers. There are other options, such as adult day care, but if you think that household help is the better choice, then go for it. You are the person in your house with the working brain.
Thanks Myrtle I believe it is the way to start. Unfortunately Dw understands that I need help and understands that she has alz so is in agreement that I should get help but that is my problem not hers. She feels she is fine on her own. As many have suggested she feels alz is the problem but she is fine she can just stay on her own and I can go out.
I know I have to make the decisions and move forward with what is best for both of us and I will it is just a difficult transition for me to make. I am sure many of you have been there even though you have been making all the decisions for a long time now just saying no this is the way it is going to be rather than coming to agreement. I know that time is gone.
Rona, could tell your wife that someone is coming in just to keep her company while you go do a few errands? The first few times it wouldn't matter if she didn't do a lot except visit.
The first few times I had help I told DH she was there to help me so he accepted having someone in the house. I didn't even leave the house the first time she was there. We cleaned windows. .
Tried that she thought it stupid as she is fine. In her mind I can go and she can be on her own. Have an Rn in the neighbourhood who we have met when out walking who does home support, around our age very nice. We have met and set up a plan. We have decided that she will ,come by and ask Lisa if she wants to go with her to walk the dogs then we will go from there. Just start casual I think once we start She will actually look forward to it we shall see. if not well so be it this has to happen.
Rona, I think your plan is excellent. Sometimes even though you can’t sell the idea of a companion, spouses will accept one because they like the person or feel they are getting something out of the visit. I refused to hire aides who just watched TV with my husband. Instead, I got someone who was willing to do things that interested him - go to Costco, attend a motorcycle show, do errands, putter around in the yard, etc. It was fun for him so he looked forward to the aide's arrival and we completely sidestepped the debate about whether he was OK to be left on his own.
Rona, having your neighborhood RN start out slowly, taking walks with your wife, sounds like a great plan. I remember well having my DH fight me about having someone in the house with him while I was gone. I couldn't just 'put my foot down' I had to create a plan that would not make him feel threatened. It was slow going but we finally got someone in the house that he slowly got used to and then liked a lot. You could also have your RN neighbor invite your wife to go get a pedicure/manicure/see a movie/go shopping/have lunch/go bowling, etc. I got a gift card for my caregiver to use to pay for gas, parking, her expenses, while my DH paid for his own. She kept receipts for me (mostly for yearend tax purposes) and my DH was always up for an outing with her. Good luck!!