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Caregiving is rewarding but very lonely
Davery
Posted: Tuesday, April 14, 2015 8:00 PM
Joined: 4/13/2015
Posts: 428


i have been care giving for both my mom and dad since 9/4/15. Mama has Lewy Body dementia. Daddy either had a stroke or traumatic brain injury on 9/4/15. I had to move them from their farm 90 mi away to an independent living facility by my house. I hired a lady to stay with them 5 hrs a day mom -fri. For the most part it has worked out well. Daddy's depression really kicked in after the move. Mama is deteriorating both physically and mentally. I am an only child so it has made caregiving a bit harder. I have had quite a few issues with my dads siblings. They are not physically able to help but they have no issue voicing their displeasure with ,out everything I do. They are currently on a kick to move them back to the farm. They plant ideas in daddy's mind and I have to deal with the fallout. One day he accused me of taking his money. I think that has been the most hurtful thing so far. He is doing better but is still not back where he was mentally. I am making some changes to make my life somewhat easier. I am giving up some time consuming hobbies because I just don't have time for them anymore. I am also seeing a counselor once a month which is helping.
littleme
Posted: Tuesday, April 14, 2015 9:19 PM
Joined: 5/4/2013
Posts: 1322


Davery, welcome to our group.

Davery, you certainly have a big load to carry. And like you, I find care-giving a very lonely road. I have my 84-year old husband wih moderate Lewy Body, and he does go to day-care twice a week. So my load is much lighter than yours. But not having close family to share with makes it harder.

But I want to welcome you to this board. Here you will find the support and understanding you crave. You can ask any question, raise any problem, or just vent when it all gets too much. Use us as the friends you need.

I look forward to hearing from your again.

Blessings

littleme

Linda Louise
Posted: Tuesday, April 14, 2015 10:01 PM
Joined: 2/19/2015
Posts: 263


It takes a lot of love and commitment as well as energy and patience to take care of both your mom and dad. It is a shame that your Dad's siblings are not more supportive of everything that you are doing instead of trying to undermind what you are trying to accomplish. Maybe you could get them all together and tell them exactly how you feel about their actions. It might help the situation. It is good that you are seeing a counselor, I sure need one.
LB54
Posted: Tuesday, April 14, 2015 10:13 PM
Joined: 10/15/2012
Posts: 330


What you are doing for your parents is wonderful and don't let anyone make you feel any different. I'm really sorry your Dad's siblings are making things difficult for you. Always do what you feel is best and don't worry what others say or think. Stay strong.
Davery
Posted: Wednesday, April 15, 2015 6:30 PM
Joined: 4/13/2015
Posts: 428


I am seeing more improvement with daddy. I wish we knew what happened to him last year. He was diagnosed with encephalopathy, stroke, vascular dementia and Alzheimer's. Every doctor I have taken him to has a different diagnosis. He is currently taking an anti psychotic drug which has made a huge change for the better. He had been showing some major animosity toward my mom but that has gone away. I read that there are stages to Lewy body dementia but I am not sure what stage mama is. I went by the apartment after work and cooked stir fry. I talked daddy into making the rice in his rice cooker. This was a major step because he has not cooked or shown any interest since 9/4/14. He was the main cook before that. If anyone knows a good website about Lewy body stages please let me know.
Davery
Posted: Friday, April 17, 2015 7:03 PM
Joined: 4/13/2015
Posts: 428


Unfortunately, mama fell today. Thank goodness she is okay. She sat on the edge of the glider and flipped it over on herself. That is the second time this week that she has fallen. I sent her doctor an email to see if he had any suggestions. I haven't heard back. I asked her to sit in the recliner instead of the glider from now on. Daddy is very upset. He sat outside with his head in his hands for most of the afternoon. I told him I would bring him some Lewy body information on Monday.
littleme
Posted: Friday, April 17, 2015 8:52 PM
Joined: 5/4/2013
Posts: 1322


Davery

I think I mentioned that my hubby also suffers from Lewy Body dementia, and I have had to find out about it too.
A good place to start is with the website of the Lewy Body Dementia Association (www.lbda.org). They have lots of information on there which should help. They also have forums like this for members, but it is very hard to join -- I applied months ago and have not heard back from them, But it is run by volunteers, so that may explain it. But you can read what others have written, and that is always interesting.

The main things I have learnt are these:
1. there are no recognised stages as in ALZheimers, so you can't predict what will will happen next
2. things can change from day to day or even hour to hour. ie my DH (hubby) was very energetic last week, wanting to do daily walks for exercise; but after 3 days, he never mentioned it again. Or for a couple of days his mind was really clear, and we had useful conversations, then the next day he was very confused, and not able to make any sort of decisions.
3. hallucinations are very frequent. My dh sees faces 'all the time', but so far they don't upset him . Maybe in time he will start to talk to them, or find them alarming.
4. there are physical changes as well, which look a bit like Parkinson's. My dh's face is now flat-sided, apparently because his cheek muscles are weak. He also walks with a stoop, and doesn't swing his arms any more. When he gets tired, he starts to walk on the balls of his feet, and shuffles, and looks as if he is going to fall on his face. But so far that hasn't happened.
5. His memory is odd - sometimes he can remember almost everything, then in a flash all the short-term memory is gone. And long-term memory is patchy, though I can usually find a trigger to help him get started.

OK I hope tis is not too disconnected, and helps a bit.
blessings
littleme

Davery
Posted: Saturday, April 18, 2015 12:25 PM
Joined: 4/13/2015
Posts: 428


Thank you for all the information. I will definitely look up the website. The first thing I noticed about mama was the feet shuffling. She is progressively getting worse but we had an awesome financial talk day before yesterday. She knew her stuff. We are really watching her. She tried to take daddy's pills which probably would have caused a hoist all stay. The falling thing has me the most concerned. My nurse son gave me some pointers yesterday on things that can be done to make the apartment safer. I am heading over there around 4 to cook supper and see what I can do about safety. Daddy is still improving but he is not there yet. He suffers from depression and he is struggling right now.
Davery
Posted: Monday, April 20, 2015 7:33 PM
Joined: 4/13/2015
Posts: 428


I don't know if we messed up today or not. I printed up quite a bit of information on Lewy Body Dementia and gave it to daddy. I wanted him to understand what all mama is going through. I'm asked him not to let mama read it. I am not sure how but mama got hold of it and read it. She asked me if it was her diagnosis or daddy's. I told her it was hers. Mi told her they were not 100% sure it is what she has. She asked me if her meds were to help with this and I said yes. I tried to focus on the physical issues rather than the dementia part. I had hoped she would not know she has dementia. I am afraid she is going to give up.
littleme
Posted: Monday, April 20, 2015 11:15 PM
Joined: 5/4/2013
Posts: 1322


Davery
I can understand that you did not want you mother to know her diagnosis, but I have found that in general my hubby is still very alert mentally, and that 'real' dementia is still a long way in the future for us. In fact, there are many days when he does so well that I question the diagnosis - but then something will pop up that reminds me.

eg yesterday he asked why do we always get up at 3.30am? We regularly get up at 6.30 for him to be ready for day care. But for a few minutes he was convinced that we always get up at 3.30. But a while later, he knew the mistake, and asked 'why did I say that?'

I have discovered that he always knew that he had a problem, so we now have given the problem a name. When he gets frustrated because he cannot find the word he wants in conversation, I say'BLAME LEWY!', and he laughs with me. Or if he spills a cup, I will say '@#$%^ LEWY!' and again he agrees. So he knows that it is something out of his control. I think that makes him feel better about himself.

My only suggestion is that you yourself learn to accept your mother's diagnosis; that you learn to treat any mishaps or changes as part of her new 'normal' and nothing to get upset about (NOT easy I know); and perhaps also start to blame them on that 'BLOODY LEWY' that has come to live in your house.

Blessings

Barbara


Bjblyghtnin
Posted: Monday, April 20, 2015 11:30 PM
Joined: 7/9/2013
Posts: 3205


When Bill has a problem trying to say something he will circle the top of his head and try to say Alz. It is all in the way you approach it. Laughter is the best medicene .
Bonnie

littleme
Posted: Tuesday, April 21, 2015 1:46 AM
Joined: 5/4/2013
Posts: 1322


Oooops.

Sorry if my use of the 'great Australian adjective ' [ie a swear word] offended anyone.

I forgot for a while that this is a more refined forum!!!!!!!!!!


Littleme

Iris L.
Posted: Tuesday, April 21, 2015 2:37 AM
Joined: 12/15/2011
Posts: 17430


A book that may help:

A Caregiver's Guide to Lewy Body Dementia by Helen Buell Whitworth and James Whitworth


As time goes on, falls become more prevalent with patients. Do everything you can to dementia-proof the home. The main web page, alz.org, has a good section on household safety.

Iris L.

Davery
Posted: Tuesday, April 21, 2015 6:42 PM
Joined: 4/13/2015
Posts: 428


Thank you so much for all the information. Mama was just as chipper as she could be today. She told me she thought her Ned's were making her jerk. I told her I would email the doc. I have noticed it too. Mama really struggled with names today but she willingly went to exercise class. The aide walks inside with both her and daddy. She and daddy go for long walks outside. The aide is 72 so she has trouble when mama starts to fall. I bought daddy an iPad for his birthday. I thought that might perk him up and it did. He was still sitting out on the patio playing with it when I left. I really am having trouble accepting mamas diagnosis but I believe it is correct. Just trying to take things one day at a time.
Davery
Posted: Wednesday, April 22, 2015 6:15 PM
Joined: 4/13/2015
Posts: 428


I ordered the book last night, I am anxious to read it.
Davery
Posted: Wednesday, April 22, 2015 6:21 PM
Joined: 4/13/2015
Posts: 428


Mama and daddy were both pretty chipper today. Mama decided to go to exercise class by herself this morning. This is only the second time she has gone in 6 months and the first time by herself. She exercised three times today so she may be really sore tomorrow. I am not super motivated myself today. I worked with daddy on his iPad. I took him a users guide I printed off the internet. I really hope he uses it. He was always on the computer when he was at the farm. Than you for the info on the book, I ordered it last night.
Davery
Posted: Thursday, April 23, 2015 6:21 PM
Joined: 4/13/2015
Posts: 428


Mama has decided to have cataract surgery. She thinks that will keep her from falling and jerking. I think it will help her eyesight somewhat but will not take care of the situation. I am taking her to the doctor Monday about the jerking and falling. She seemed anxious today. I called Robbie and had her put the appointment on the calendar. That apparently upset mama and she carried the calendar around with her the rest of the day. She told me this afternoon she didn't think they needed Robbie anymore. Oh my, they really do. I asked her if she was upset with Robbie and she said no. She went to exercise class again this morning which I think is great.
littleme
Posted: Thursday, April 23, 2015 7:54 PM
Joined: 5/4/2013
Posts: 1322


Davery

It sounds as if your mother is really showing the ups and downs of Lewy -- cheerful one day and anxious the next. It must be so hard to watch, we want so much to 'fix' everything for them, but there is really nothing we can do except be there for them.

I hope the cataract op is successful. You might want to do some research about what type of anastehetic will be used. Some are 'better' for our loved ones than others, as they are less likely to cause the dementia to worsen. Then you can warn the anaesthologist (sp?) about your worries.

Blessings

Barbara

Davery
Posted: Friday, April 24, 2015 6:43 PM
Joined: 4/13/2015
Posts: 428


I got my caregivers guide book in the mail today. I am anxious to get started on it. Mama has a doctor's appt Monday so I will talk to them about the anesthetic. Mama has become almost ocd about exercising. We have all been praising her progress. I came home early today with a bad headache. I slept most of the day. I fixed mama and daddy stir fry this afternoon and headed over to pick my grandbaby up. Mama didn't seem quite as anxious today as yesterday. Daddy is having trouble with his iPad so I told him I would help him with it tomorrow. My son in law has picked the baby up. I am going to read a little then head to bed early.
Davery
Posted: Sunday, May 3, 2015 5:14 PM
Joined: 4/13/2015
Posts: 428


I saw the counselor Thursday. It was a good session. I told her I was concerned about Lewy body disease being hereditary and she just talked around it. I know it can tend to run in families. Mama is mad at my daughter in law. I pray she doesn't say anything inappropriate to her. I don't get to see my sons baby as much as I do my daughters. It really upsets mama. I may have to sit Kayla down and tell her that mama may pop off with some off the wall stuff sometimes but it is the disease. We have rented a house on the lake for everyone's birthday in June. It may be special.
Alzwell
Posted: Sunday, May 3, 2015 9:47 PM
Joined: 3/1/2015
Posts: 2140


Little me, I love the way you described making your husband feel better by blaming "Lewey".

That still validates him as a person and gives a reason for things, as you said, beyond his control.

Thanks for sharing this. It's a good example for all of us. Of course not all deal with Lewey Body, but we would all do well to find ways to take the pressure off our LO, helping them to realize that their form of dementia came to them through no fault of their own.

Dana

Davery
Posted: Monday, May 4, 2015 7:22 PM
Joined: 4/13/2015
Posts: 428


I appreciate all the helpful comments. I have no clue what I am doing. Daddy takes his driving evaluation tomorrow. I am as nervous as he is. It would give both him and mama a sense of independence. Mama has accepted that she will not be able to drive. She had another good day today. I never know what to expect. She gets so stressed about anything that has to do with me. For example, yesterday she got upset because I held the baby instead of eating lunch. I was trying to give my daughter a break so she could eat an uninterrupted meal. Mama wanted me to eat right then. i am noticing she is having more and more trouble eating without making a mess. We are trying to let her be as independent as possible for as long as we can.
littleme
Posted: Monday, May 4, 2015 7:59 PM
Joined: 5/4/2013
Posts: 1322


Davery, it's good to hear from you again. Don't feel bad that you 'don't know what you are doing'; I've been in this boat longer than you, and I still get lost!

It is so daunting when plans that you have made are suddenly threatened; eg last night dh suddenly announced that he would not go to daycare on Mondays again. Quesioning revealed that he doesn't feel as 'disabled' as the others there. I suggested that his being there was a help to the staff. He thought for a while and then guessed he would go back after all.

Last year he wanted new hearing aids - I spent $2000+ on the new set. But he won't/can't wear them as they are too difficult to get into the ear canals, and if he does get them in, he knocks them out every time he puts his glasses on or off [the battery fits behind the ear.] Now he insists that he doesn't need aids- oh yeah, he has been wearing aids for at least 10 years, which he now denies. And he is always asking for the TV to be louder. But I think conprehension for him is now more of a problem than hearing.

At life with Lewy is never boring!

Blessings, littleme

Davery
Posted: Tuesday, May 5, 2015 6:31 PM
Joined: 4/13/2015
Posts: 428


this site has been so good for me. I have not ever been around anyone diagnosed with Lewy body disease so hearing everyone's stories have been a big help. Today was a big day. Daddy got his driving privileges back. I am a little apprehensive since we still don't know what happened to him 9/4 of last year. He went from fully functioning to catatonic. He was diagnosed with encephalopathy, stroke, alzheimers to they just don't really know. Meh is pretty much back to himself with a few exceptions. Mama is doing a bit better with going to exercise class every day. I feel like things are finally somewhat looking up. I am trying to give them as much independence as possible while still checking on them daily.
Davery
Posted: Wednesday, May 6, 2015 6:27 PM
Joined: 4/13/2015
Posts: 428


Mama made a strange comment this morning. She told me she didn't want me to start paying their bills online because she wouldn't be able to do it if something happened to me. I don't know if she thinks I am dying or what. The increased exercise, double aricept and increased depression med has made an improvement. I know it is only temporary but I am thankful for any improvement I get. I don't know if this is Lewy body or not but she is very stubborn once she gets something in her head.
littleme
Posted: Wednesday, May 6, 2015 10:49 PM
Joined: 5/4/2013
Posts: 1322


Davery

A very wise member of this forum made a remark that has stuck with me 'Pick your battles!'

I would wait and see if this is one of the things that you DM [dear Mama] is stubborn about. If it is, then don't attempt to change her mind ; you will never win. On the other hand, she may forget all about it, and after a few weeks you can quietly go ahead without letting her know what you are doing. That is NOT being deceitful, it is you as the caregiver making the decisions that are right for your DM and for you.

I have had the experience of my DH[dear husband] being stubborn. For several months, he often raised the subject of getting a new pair of pale grey trousers. Eventually I had to help him buy them, even though he has LOTS of trousers already! It was just not worth having a battle with him.

Blessings

Littleme

alpapy
Posted: Thursday, May 7, 2015 8:44 PM
Joined: 6/24/2014
Posts: 200


I have been sole caregiver for my wife for the last 14 months. I've yet to find any thing rewarding about the experience.
littleme
Posted: Friday, May 8, 2015 8:38 PM
Joined: 5/4/2013
Posts: 1322


alpapy

welcome to this group that noone would choose to join.

I am soo sorry that you are having a difficult time as your wife's caregiver. Why not tell us something about your difficulties, and maybe we can make some helpful suggestions? But in any case, you will get lots of support from those of us who are dealing with the same types of problems.

Blessings, and lots of ((((hugs))))

littleme

Davery
Posted: Saturday, May 9, 2015 8:37 PM
Joined: 4/13/2015
Posts: 428


Thought I would share this. Mama seems to have more hope since we increased the aricept and depression mess. She also has increased her exercise. I understand your comment about having difficulty finding anything rewarding about caregiving. I finally came to the reLization that this is my new normal. It is very Irving and trying at times but I feel like God has given me another chance with mama and daddy. I am trying to store memories of the good times. If nothing else, maybe this experience will help me help someone in the future. I struggled so much in the beginning because daddy was catatonic and did not know anyone. He had no bladder or bowel control. He became angry at everyone including me. He hated the apartment I moved them to. Mama was messing with her mess during this time and I thought I would lose my mind. The aunts that said they would help did pretty much nothing except criticize everything I have done with my dad from moving them to little rock to having my dad admitted to Geri psych for a week to straighten out his meds. I believe I have become a much stronger person having to deal with the day to day care of my parents.
Davery
Posted: Sunday, May 10, 2015 5:54 PM
Joined: 4/13/2015
Posts: 428


Today was a sweet day. I got the baby ready for church and picked up mama and daddy. My uncle came along with my son, daughter in law and other grand baby. We ate lunch together at the apartment dining room. Mama had a good day. She is having more and more issues with getting food in her mouth.
Davery
Posted: Monday, May 11, 2015 6:30 PM
Joined: 4/13/2015
Posts: 428


Mama and daddy are going to daddy's cousins husbands funeral tomorrow. Daddy seems very sad. Alvis was just 4 months older than him. I stopped by and made chef salads and fixed a bowl of fresh fruit. Daddy is supposed to hear tomorrow if the doctor signed off on his driving. Mama is getting sloppier with picking up. She is throwing Walmart bags in the pantry. She drops her tissues on the floor. I found a dirt fork in with the clean silverware. She gave me a grocery list but already had most of the stuff she sent me for. She asked for more milk. I had to pour out one bottle that was out of date and never opened. Another jug was half full. I will have to double check her list next time.
littleme
Posted: Monday, May 11, 2015 9:15 PM
Joined: 5/4/2013
Posts: 1322


Davery

It's good that your DM is still trying to manage housekeeping tasks, but the problems you see like dirty cutlery, and incorrect shopping lists will keep happening. Sometime in the future, you will have to be responsible for all those tasks. I hope it is a long time in the future.

Blessings

Littleme

Davery
Posted: Tuesday, May 12, 2015 5:39 PM
Joined: 4/13/2015
Posts: 428


Mama and daddy spent the day with my aunt going to the cousins funeral. Mama called me around 5 and asked me if I could go to the apartment right then. Kind of scared me. I asked her what was wrong and she said daddy had a bump on his back. I asked her if it was hurting him and she said no. She said it had been there for awhile but she didn't know how to doctor it. She also didn't want me to be mad at her for keeping stuff from me. I told her to put neosporin on it. I explained the hubs was broken down on his way home from work and I had to go get him. I told her it should be fine since it has been there for awhile.
Davery
Posted: Wednesday, May 13, 2015 7:12 PM
Joined: 4/13/2015
Posts: 428


Daddy got limited driving privileges from his doctor this morning. I am honestly scared. He, mama and Robbie are going to SAMs tomorrow for his first outing. I am glad Robbie is going. Hopefully, mama won't fall and hurt herself. She seemed decent today. She is still really struggling for words. She keeps calling my grand baby Paxton instead of Payton. She calls Robbie Bobbie.
Davery
Posted: Thursday, May 14, 2015 6:03 PM
Joined: 4/13/2015
Posts: 428


Daddy took mama and the aide to SAMs today. I don't know who was the most excited. This was daddy's first time to drive his truck in 8 months. Mama was in a good mood but not getting up well at all. I found out she hasn't gone to exercise class one time this week. Last week she was the exercise nazi. I asked her to please go tomorrow. She seems to get around better when she exercises. I am trying to keep dinner healthy so I cooked stir fry and daddy made brown rice.
 
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