From Us to You

Harriet:

I’ve been reading other people’s blogs, and support group postings, who struggle with dementia. I feel that my troubles are so minor in comparison. But maybe, there are people, out there, at my level, experiencing the same problems.

 Some days/nights are worse than others. Getting a good night’s sleep is so precious, (and difficult). It is so hard to shut my mind off! I’m trying to get things done earlier in the day. There are a lot of things on the internet about how to get to sleep.

I didn’t know, until recently, that people with Alzheimer’s, and other dementias, can have the problem of reoccurring Urinary Tract Infections. I wonder why this is a common problem for people with dementia?

I’m so frustrated! This a common word in my mind, but I don’t always speak it. I am always losing things. I know this is true for everybody, but these are very important things, like hearing aids, glasses, keys, passport, watches. We try to think of ways to do things, so this won’t happen; such as putting little plastic boxes around the house that I put the hearing aids in or have a place in each room for those things. Well, so far nothing has worked!!! I’ve lost my right hearing aid, and Dave and I have looked in every room, box, bag, under furniture, on top of furniture, where did it go??? We were watching the grandkids when it came up missing. Did one of them take it to play with? They all say, “No Grandma. I wouldn’t play with that.” I was their age once and sometimes temptation comes, you just want to look at it, see how it works. Something happens, OH NO!! NEVER TELL GRANDMA!!! I remember those days…did that happen here? I don’t know, I just want my hearing aid back.

David:

Harriet has had a really good week. Last Sunday, March 17, we were going to a study/dinner group from church. Harriet really didn’t want to go because she was having trouble with speaking; stuttering, forgetting words, saying the wrong words, the usual stuff. I assured her that, if at any point, she felt uncomfortable and wanted to leave, that we would leave.  I also reminded her that this group is very loving, accepting, sympathetic, and wouldn’t judge her if she had trouble speaking. She agreed with everything I said and started getting ready. We were the first to arrive, (We are usually the last ones.) and were warmly greeted by Steve and Joy. Everyone began to arrive, and they were genuinely happy to see Harriet. The meeting was wonderful, Harriet was happy, talkative, openly sharing feelings and ideas with others. This is so important because once a person with dementia starts isolating themselves things get worse. I think we all have been in places where we felt awkward and unwelcome. You know how that makes you feel. People with dementia can project their negative feelings onto others and feel like people are looking down on them even when it’s not true. I was very happy that Harriet could push through the negative expectations, relax and have a great evening.

Speaking of negative expectations, have you had trouble with relatives who cannot accept the diagnosis that the Neurologist gives. People share, on blogs, and the different Facebook support groups, about relatives who think that , the Caregiver, is making all this up and their brother/sister does not have dementia at all. Then, there are those family members seem to feel that the one with dementia is a hypochondriac and it’s all in their head, (Which of course, is true, it is all in their head. Just not the way the relative is speaking) or has been talked into this idea by the doctor, and the Caregiver is supporting their delusions.

There are times when this happens, because the person with dementia can muster enough energy to appear very normal for visitors, doctor’s, relatives and friends. For a short period of time, in the right situation, the Loved One With Dementia (LOWD) will have enough energy to be somewhat like their old self. However, the caregiver knows that for one or two days, after such an outing, the LOWD will be exhausted, and all their symptoms will be back in force.

If those relatives would look at the situation and listen to the caregiver, they would realize that most caregivers would do anything to return to the way life was before the dementia. When I read blogs, and support group pages, I hear things like, I feel like I’m in hell, I wish I were dead, I don’t know how much more of this I can stand, God has cursed my life. I cannot understand what these unkind family members think the Caregiver is getting out of their position. Why would anyone want dementia to come into their life? What most caregivers get out of this are, depression, anger, frustration, financial trouble, and early death. SIGN ME UP!! Only love will cause the caregiver to remain with their LOWD.

In cases like this, Harriet and I have decided that those people need to stay out of the loop. That is, we will not discuss anything about Harriet’s diagnosis, symptoms, troubles, doctors, with those who cannot be supportive. For example, somehow a discussion came up about Harriet’s dementia and I was speaking about something that she could no longer do. A family member jumps in and, with a very snotty tone of voice, asks, “Are you sure she can’t do it? Come on! Are you sure she can’t do that? Are you?” How do you answer someone like that? “Well, you’re probably right, we all know that Harriet has become a hypochondriac! Even though in 50 years I’ve never seen her like that, I guess people can change.”

Some people we know, have been completely unsupportive. At first, I thought it was just because they were uncomfortable and didn’t know what to say. When they continued say stupid things like, “Your symptoms are common to everyone our age, it’s no big deal. Or I don’t know why you go to those damn doctors. I wouldn’t believe a word they say!” then you know they have a problem. Think about it, this is the worst thing Harriet has faced in her entire life. To be dismissed with, “it’s no big deal, I wouldn’t believe anything the doctor says” is thoughtless and cruel.

When someone tells you that they have been diagnosed with dementia, the thing to say is, “I’m so sorry. What did the doctor say?” When someone with dementia is speaking, loses their word and seems embarrassed, THEN you can support them by saying something like, “I know how you feel, I do the same thing. I understand that Alzheimer’s makes it a lot worse for you but it’s a common problem for people our age.” My sister was so kind to Harriet and said something like, “I know how you feel, I forget words all the time, and anyway, we don’t care about that we just enjoy listening to your stories.”

Sad to say, some people do not have it within themselves to be supportive, empathetic, or kind. I don’t know why. When people like that are around, we will not discuss Harriet’s condition. They have made it clear that they will not, and cannot, be supportive. Rather, they want to argue, put you down, and cause trouble. Do whatever it takes to keep people like that in the dark.

I thank God that, in this regard, I haven’t faced anything like some of you have. From what I’ve read, some of you may need to file a restraining order and get the legal system involved. This is difficult enough, for both the Caregiver and the LOWD, don’t add to your stress, anger, depression, and sadness, by allowing some jerk to push you around. Remember, Caregivers have a high death rate only because they are caregivers. Don’t let negative people push you into an early death. This negativity builds up in your system and causes all kinds of health problems. Do whatever you have to do, to have peace in your heart.

As a Christian I think of Jesus hanging on the cross praying for those who were killing him. He said, “Father, forgive them. They don’t know what they are doing.” This must become our prayer when certain friends and family members treat us badly. If you’re like me, every time the event comes to mind, I can still feel the anger and sadness. Therefore, I must take Jesus’ teaching to heart and forgive the rude person again and again. Don’t forget, when you forgive someone you are not saying that their behavior was okay. You are just taking away their power over you to hurt you over and over.  Only in this way can I live in peace.

Harriet:

May you be comforted and strengthened in all your needs, as you walk through the path before you. It may seem you are alone at times, but you aren’t, He is ever with you. Love, peace, and joy be yours.

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