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 The stress between the spousal caregiver and the LBD patient 
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 49
Post The stress between the spousal caregiver and the LBD patient
As a LBD sufferer, but still in the middle stages of this disease, I see the stress and conflict between my wife who is my caregiver and myself. We have numerous conflicts over future plans , money, home choices, and even where we live. When the smoke clears, we come to consciences and everything is right n our world. But, inevitably, we get our wires crossed again and the conflict and stress arises again. We are on different plains when it comes to my disease. She looks at the future including care needs, her living conditions, the financial costs, friends to depend on, and other personal issues. I look at today! That's it, today! I want to move back to Virginia to be with my Navy buddies. This move would be costly especially because of Virginia State income tax. This would also isolate her from our son and his family. I realize my views are impractical and unrealistic.

You can see how stress can effect our relationship!


Mon May 19, 2014 9:01 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: The stress between the spousal caregiver and the LBD pat
Can you arrange for a visit to VA or invite your buddies to come to you for a visit? Do you Skype with them? That's a great way to be in touch with friends and relatives who are far away. Caregivers do need to plan before things become a crisis, so I can understand why your wife is looking to the future and trying her best to figure out what to do. Best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon May 19, 2014 10:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The stress between the spousal caregiver and the LBD pat
There comes a point in the disease process where the caregiver-spouse must make the decisions. Obviously, this is not without its difficulties. Planning for your future needs as well as for the support she needs is crucial. I hope you will have the opportunity to visit with your Navy buddies. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed May 21, 2014 12:23 pm
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 86
Location: Hawaii
Post Re: The stress between the spousal caregiver and the LBD pat
Donald, it's true; it's not easy balancing your needs as a patient and your wife's needs as a caregiver. Then, balancing both your needs as spouses (and as individuals). Lynn's ideas about Skyping with your Navy buddies, as well as planning for them to visit you and, perhaps, you visiting them, is very practical and doable.

How fortunate for you and your family that you have a diagnosis (and, therefore, a prognosis/outcome) relatively early in the disease. This allows you the luxury of planning ahead, something which many of us didn't have with our LOs. It was hard just keeping up, let alone trying to plan for the future!

You're thinking farther ahead than what you give yourself credit for! You're very much aware of your wife's concerns, as you've written here. Sure, these issues will continue to be a "challenge" (that is, stress!).

Maybe, writing out these issues and listing possible solutions from you, your wife and others, might help. That way, when (not if!) your "wires get crossed", you and your wife can look at your list and remind each other what was decided, or at least discussed.

Your concern for your wife's feelings is admirable (and I'm sure much appreciated) under any circumstances. But it is especially touching with LBD in your midst. Stay strong!

_________________
AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Fri May 23, 2014 12:07 am
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Joined: Fri Oct 19, 2012 11:25 am
Posts: 14
Post Re: The stress between the spousal caregiver and the LBD pat
AS the wife who is the caregiver, her responsibilities have changed so tremendously and drastically, that it is her job to look to the future and plan for unforeseen events. She will also be sensitive to your needs/desires as well. With my husband, there are so many days he is just unable to participate in any planning/follow through with important activities. I encourage him to stay as actively participating as best he can for as long as he can. I wish you both the best. I know firsthand that dealing with this monster is draining! God bless


Thu Jun 12, 2014 2:32 am
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Joined: Mon Mar 24, 2014 9:50 pm
Posts: 3
Location: Arizona
Post Re: The stress between the spousal caregiver and the LBD pat
You have my great sympathy! The where-to-locate problems are the worst! We are in California now near my son, but the assisted living place where we are is eating up every bit of our savings. We have a house in Arizona where we could live for less money but without family support. I am physically sick over this decision. My husband has gotten to the stage where he is very stiff and difficult to move. I am much smaller than he is and have had numerous back surgeries and fusions. Suggestions? About your situation, I like the idea of frequent Skyping and visits. This seems better than moving with all the difficulties of that. Oh and, the advisor from A Place for Mom said that a lot of places will not accept Lewy Body patients. Has anyone else heard this?


Sat Jun 28, 2014 9:12 pm
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 49
Post Re: The stress between the spousal caregiver and the LBD pat
A number of places in Virginia turned us down as soon as they heard I had a DX of LBD. But, here in Florida, at least at Azalea Trace, they do not seem phased. Of course, we are only on the waiting list, and have been for 9 months!! But, I want to go home to be with my friends. Our Son, Daughter in Law and grandsons are no help!! They talk a good help but they do not deliver. They are worthless. My friends in Virginia were more help!! But, my wife wants to be with the useless grandkids. My next door neighbor helps me more than my Son. Virginia would be better, But I am doomed to stay in Florida.


Sat Jun 28, 2014 10:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: The stress between the spousal caregiver and the LBD pat
Donald, could it be that your kids and grandkids are a help to your wife, who is in turn, helping you? Perhaps their geographical closeness is helping her cope with the stress of your illness and you aren't aware of how much they are giving her moral support. I know how much moral support I needed when I let my dad stay nearer to his home town while I commuted about 1,500 mi. every few weeks. I needed friends and family close by, and most of my family was 500 miles away from me when I was with my dad.

Have you tried Skypeing your buddies who are not close by? Do you call them? Email? IM? There are so many ways that we can keep in touch electronically that it is the next best thing to having them with you. They can't be there to help with physical things, but at least you'd be able to talk with them. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Jun 30, 2014 12:38 pm
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 49
Post Re: The stress between the spousal caregiver and the LBD pat
I appreciate your point. And if my son and his wife provided any help or support to my wife I would give in. But, there is none. My son said, when they asked us to move to Florida, they would mow the lawn and do any maintenance on the home we needed. That lasted one summer! Now, I mow, paint, repair, with the help of my next door neighbor. My son did not even offer to watch our dogs when we go to Iowa for my wife's family reunion!! They are worthless, to anyone! And frankly, I have had my fill. They are very happy to take money from us or go on an outing we pay for. But never offer to have us over of dinner, because my useless, lazy, gold brick, daughter in law does not cook. They live from McDonalds food. And if we have them over, my wife works hard on a great home cooked meal and the boys, bioth teenagers, and my useless daughter in law complain about the food. Nope, I am moving back to Virginia, with or without my wife!! To hell with family support.


Mon Jun 30, 2014 7:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: The stress between the spousal caregiver and the LBD pat
Well that just stinks, Donald! I am so sorry that your family in FL is of so little support and help to both you and your wife. One can only hope that if/when we need our kids to help us they do. I am hoping that by setting a good example for my own kids that they help out as we become older and less able to do things. But there is no guarantee, is there?

Tomorrow my son who lives in South America and is visiting for a few weeks will be helping us by splitting wood and getting heavy bags of mulch moved around the yard so he can help me mulch. With any luck he will be doing more of this as we age… Time will tell… At least they won't have the excuse that they don't know HOW to do it.

I can't imagine how frustrating your situation must be for your wife and you. Do you have kids elsewhere? Big hugs, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Jun 30, 2014 8:03 pm
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 49
Post Re: The stress between the spousal caregiver and the LBD pat
This son is the only child we have. Let me give you some other back ground. They have followed me, stole for from our house, and continually get money from us. They want our savings to feather they nest. We have been very generous in the past. Yet, they offer no help. They just take. I myself, would like to be able to give in to my disease. I am tired of fighting for control of my mind and body. I am exhausted, depressed, and defeated. Before we left Virginia, we lived in an Senior's apartment that fit us well. There is no such facility in the Panhandle of Florida. Continuing care facilities are in short supply here and my wife INSISTS in being close to our son and grand kids. Why, I do not know. The grand kids come before me as far as I can tell. I have been a faithful, husband, god provider, and solid man for the 41 years of our marriage. I want to just live the rest of my life around friends, talking about the Navy, relaxing, without ear work house work, and stress. But, that seems to be too much to ask for. Oh, yes, I have told all this to my psychologist. It helps to talk, but it solves nothing. Tough spot to be in. If I insist on the move, I will be the villain. If I stay, I am extremely unhappy. Life sucks.


Mon Jun 30, 2014 8:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: The stress between the spousal caregiver and the LBD pat
Does your wife ever go to a psych. appointment with you, so you both have a safe place to talk about this? It does sound like an awful situation for you. And, what did you think about the idea of Skyping with your friends?

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Jun 30, 2014 8:40 pm
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