Hi all, just thought I’d update you all on what is happening here. I know that a number of you have felt that it may be time for me to visit the idea of placement for my partner. And a part of me believes you are right.
On the other hand I have several reasons (beyond love for her) that are keeping me from doing more than realizing the eventual inevitability of this outcome.
One is my family has always cared for the elderly in our family - with one taking on the major responsibility, but others pitching in enough to make the task manageable. No burn out. I have modeled this behavior for my son all his life - and bless him, he is coming up for weekends from DC every month to six weeks to spend time with us and pitch in to help with the errands and tasks that are too much for me. I do not ask for this help - he willingly provides it.
The second reason is that I have not totally given up on my partner’s family, even though not one of them calls in to check or ask if there is anything they can do. I recently asked her sister if we could have a family meeting - response was “didn’t I know everyone works”. When I asked my partner’s son, he didn’t think anyone would be willing. I am currently in contact with partner’s brother’s wife - actually the only one in the family who understands what I am going through. If this attempt fails, I am writing them off. But it will hurt, oh how it will hurt. I am not going to ask for much from this family, but there is some help they can give, and some things they need to hear together upfront, so I do not become a villain who happens to be taking care of their sister/mother/daughter. At present there is a lot of talk going back and forth between them, but none, absolutely none, directed to me, no questions, no opinions.
Third reason is finances, isn’t if always? When/if the PACE program decides that my partner can no longer be kept safely at home, I will on the relative scale of things be poor, but solvent. If they do not make that decision, things will be a little more rocky. I am not knocking the PACE program, they are helping me survive by providing home care four mornings a week, daycare four days a week, and all my partner’s medical needs.
In the meantime, in addition to any suggestions regarding the above paragraphs, does anyone have any ideas about trazadone for sleep? This is her doctor’s suggestion because of her nighttime wandering. She is very unsteady on her feet as it is. She is taking ativan for the days she goes to PACE because she can become agitated there in the afternoon before I come to pick her up. I give it to her occasionally here as well, when I see her becoming ramped up.
Trazadone is definitely worth a try. My DH is on it and it works well. What you have to be vigilant about is the timing. When it kicks in the patient becomes wobbly and sleepy before they fall asleep which can lead to falls. If you can get your partner to take it and stay in bed while you watch TV or read to her or listen to music, you can avert some of these problems.
Most always be willing to try solutions offered by professionals. Know that it might not be the correct fix, but you would never know if you didn't try. And give these solutions a decent trial period. Sometimes, as the patient becomes acclimated to the medication, the side effects will diminish (but not go away).
I was on trazadone back in the 80s for a couple years. For me it kicked in about 15 minutes after taking with dizziness and hard to keep eyes open. I took it for depression. Unlike for sleeping pills, for me when I got up 6 hours later for work it did not leave me groggy. The negative was it caused a horrible weight gain. I had put on over 60 pounds before I went to a new doctor who said it was the trazadone causing the weight gain and switched me to Prozac. (stopped the weight gain but I never was able to loose it)
Worth a try but be aware, like any medications, it could have the opposite effect. You just won't know until you try it.
lindylou, I think the disappointment you’re feeling with your partner’s family is based on the fact that their customs and practices are not the same as your family’s. They are like a tribe that has different customs than your tribe does. Your family has always cared for its elderly members (I think you mean at home) by one taking on the major responsibility and others pitching in, so there was no burn out. It sounds like your partner’s family does not observe this custom. So by asking them to help, you’re calling on them to do something that was never their practice and, what’s more, by asking them to attend a family meeting, you are asking them to assume some kind of responsibility for implementing this practice. It's especially hurtful when you explicitly ask for help and are refused. I experienced this many years ago when I asked a member of my husband's family to assume a specific legal responsibility and was told no. Because I knew the history of their relationship, I was stunned and I was very hurt on his behalf. But now I realize that this person might as well be part of a tribe that lives in a far off land. The problem was not their behavior; it was my assumption that they would behave as I would have.
There are several people on this site who cared for their spouses at home until the end, but I don’t know how much help they got from family members. If they did get a lot of help, my guess is was from their own children, who (like your son), grew up with the same expectation about home care that they did. Maybe they will chime in about their experiences.
Family help! Many of you know my younger brother has been living with our oldest sister (23 year age difference) who has vascular dementia and probably some AD mixed in due to family history. My brother is burned out. He works all day plus has a 2 hour bus ride morning and night, then comes home to deal with her who usually is up at night. Her son asked me last winter to consider moving back to help by being there during the day which I said no to. I sent a message via Facebook messenger to her kids and grandkids saying it was time they stepped up to take care of their mom/grandmother. I told them she would and did do anything for them and now it is they pay back. She is not the responsibility of her siblings to take her of but her children. Just as we took care of our mom, my mom and her siblings cared for their mom, it is time they step up. When I was considering moving back there last February I was thinking on the time frame we, her siblings, are older and our lives are past the working, raising families, etc. Then it hit me - her kids are the same age bracket as we are. I was born in 52, one nephew 55, another 57 and niece 61. My younger brother and sister were born 60 and 61. So I said no and now it is their time to step up but so far there has been no response from them. She gave everything to them and now they are too selfish to sacrifice for their mom.
Point is - families won't step up unless there are no other options. They know you won't abandon her so they won't do what is right.
Charlotte, I remember when the issue about your oldest sister came up and you were asked to move there to provide home care. How is your sister doing? Is she still staying alone while your brother is at work? And how about your nephew and his wife, Rhonda? Have they gone over there to visit or help at all? I cannot imagine how your younger brother is handling this.
As far as I know she still stays alone while our brother works or often a friend of my brother stays. He and my sister get along well. Often he can find a bribe to get her to do things like take a shower! He is burnt out and has asked for help but so far none. I have no idea how often her son shows up. I know there are often days my brother does even make it to work because she wants to leave or has had him up all night. I haven't talked to him for a while. In June he misunderstood something, was embarrassed and has refused to talk to me. I wasn't upset that much over it but evidently he is. Have not heard of any response from her kids or grandkids that got the message I sent. I know he medicates with drugs. Hopefully with marijuana being legal he is using that vs the other drugs he was using.
Trazadone is worth trying. The sleepiness is a side effect, not an intent of the medication. It did wonders for my wife when everything else failed. We think it also helps her function better. Discuss this with her doctor.
Keep in mind that dealing with dementia is different from dealing with aging. If you are comfortable with taking care of her and are secure she is safe then continue. But her needs might become too great for your abilities, I am thinking about if/when she needs 24 hour care. I know one person who kept his wife at home until unable to, he realized after he placed her that she was doing better in a care facility than at home and felt guilty about depriving her of at least 1 year of higher quality living.
My MIL took care of her mother, who had dementia, for many years. They built an apartment for her on their property. But eventually her needs were too great and she moved to an ALF where she did better than with her daughter, and eventually to a skilled nursing home in her very last years. When my MIL got sick my FIL did a huge amount of care on his own until the last few months, his daughters were very concerned about his health, and that is with one daughter moving to be close to them and to help with her care.
So do what you think is best and don't focus on meeting external goals. It is good that you are reaching out to her family and that your son is providing assistance.
What people often do not think about is when we keep them at home they are limited in their interaction with others. Probably why many will improve for a while after placement. Even people who are not 'social butterflies' often will benefit from being around others where at home contact is limited for most. That is a reason I sent my husband to day care. He is a social person and benefits from the contact with others since during the day the number of people outside for him to visit with are limited.
I have no experience with trazadone but I have a viewpoint on your third paragraph where I largely agree with Myrtle and Charlotte but I would come at that a little differently.
You will not succeed in telling a group of people that they should be different, however much I admire the values your family teaches and whatever strategies and tactics you take.
You will also never get that meeting because very little of this is topic is insufficiently understood by all parties. All positions are already taken and more information in the form of being told we are inadequate and we should change to what you say is going to fly like a lead balloon. They already know you want to talk to them about doing more and you already have their decision about that topic.
You will probably still try because those are your values and I personally agree with you. The main point is to get more help for your other half from her own family. I agree with you trying to do that. But your third paragraph reads that you are right and they are wrong and they must be told that to wake them up. That's how most wars start.
Underneath the rights and wrongs of any of this is the disease, just the fact of which drives many away as most here will attest. There is something about dementia which has left it outside the other progress society has made where cancer is an example of that progress. I think all of us who go through this understand far more than we would like just how much that hurts as you said.
I tell you frankly that the person I am concerned about is you which is no different from your first post which I remember to a hundred posts from now. And there my point is that however brave and strong and giving we are, we are also under a tremendous strain and that should be respected. You have good support and it sounds like it's all well earned. Many have far less and I don't say that for any reason other than your well being going down the road will almost certainly be helped where the glass is half full and will be hurt by where the glass is empty.
Eighteen months afterwards, my life is still populated by those where the glass was half full. All of them are active parts of my world and all of them have played their parts in my steps back to from the years of duress and my huge loss. I believe that anyone who has even one person they can talk to and even rely on for their part, is a very rich person and that the hardest road is when every point of the compass has no such person.
Which brings me to Myrtle's tribe. No one here is alone. Everyone here whether it's now or ten years ago is here for their own reasons but nothing anyone says changes the most fundamental fact. No one else is part of this tribe. Only we are. We are exactly the soldiers who hit that beach in Normandy and everyone who fought in that is a brother and everyone who didn't knows nothing about it.