My Dad is going to Hospice

[bean29]

My Dad has been a paraplegic/quadrapelgic for the past 3 years.  He has a degenerative Muscle Disease that has progressed from difficulty walking, to Dad being in a wheelchair and having use of his hands, to limited use of his hands to no use of his hands, to now he has difficulty even swallowing.

My mom has cared for my Dad at home all this time, with having a home health agency come in once a week to give Dad a shower and a nurse come to change his catheter every 3 weeks and a visiting Dr. came in to check on him periodically.

In the past 2 months Dad has been hospitalized 3x.  He is not taking in enough liquid, not eating enough.  We had a family meeting at the hopital on Monday and They told us my Dad has a degenerative muscle disiase similar to ALS but not specifically ALS.  To diagnose what he has definatively they would need to take a large section of muscle tissue and there is no point b/c they don't beleive they could effect a treatment/cure.

They also indicated that from a Cat Scan and an MRI spaced about a year apart they can see that my Dad has Severe Alzheimers.  Dad's psychologist had indicated about 6 months ago that he had Dementia but Mom was surprised by the Alzheimer's Diagnosis.

My Parents have a Living Will or a Health Care Power of Attorney.  My Mother also has a financial power of attorney and they had done some "Senior Planning" with a Senior Planning agency.  My Mother also has some kind of written Catholic Perspective on the issues surrounding Feeding Tubes etc.

When Mom was looking into writing the health care power of attorney she and several friends atended a semilar on the subject together it was sponsored by the Archdioses or a local Catholic Church, so her planning is in accordance with Catholic Teaching.

We had been back and forth on whether or not to insert a feeding tube, but the Dr. and Social worker explained that even with a feeding tube the Muscle disorder is affecting swallowing and will soon also affect breathing so end result will be the same.  Given the additional diagnoses of Alzhemers and the fact that Dad is Bi-Polar, has been on Lithium for 30 years and Lithium affects the kidneys (kidney function has been borderine for a long time)...putting in a feeding tube will in no way prevent a vegatative state or death.

So, in addition to the group that spearheaded the Health Care Directives being written, Mom has another group of close friends that she meets with once a Month to play cards with.  Most of these Women nursed their spouses through long illnesses.  One spuse was Diabetic.  He was careful of his diet, and excercised daily but in the end, Dibetes took several limbs and eventually won.  Another Spouse had MS and another's husband had a brain tumor.  I have long appreciated their support of my Mother, so on Monday when the consensus was we should look for a Hospice and Mom mentioned she had Card Club on Tuesday, I told her they were part of her support network and she should go.

One of the women in the group was very vocal in her objections to us not going the route of a feeding tube.  The Woman who lost her husband to MS called Mom last night to let her know that J is alone and she is just very strict right to life person.  She told her several people have invited her to leave hospices etc because of her vocal beleifs.

I wish this had not happened but the particular person has been supportive and helpful to my Mom in caring for Dad at home, so I just told my Mom that is J-she has always been very strict in her beleifs and left it at that.

The senior planning group and my Mom's support network of friends narrowed the Hospices we are considering down to about 3 close to my Mom with great reputations.  One is far an away better than the rest so that is our top choice.  The other 2 are seperate locations of the same entity.  We were very impressed with the nurse we met with, so it is a second choice we will not be disappointed in.

My Dad seems to be doing good, he is getting IV fluids but eats very little.  Alzheimers is not obvious as he seems to recognize us when he is hydrated.  He has had low blood pressure for a long time now and finding a vein to put the iv into is a problem (the nurse said the low blood pressure is common in those that are dying and the collapsing veins are aggravated by the low blood pressure.  Once the iv liquids are stopped Dad will probably not have a clear mind for more than a few days.  Signs of Alzeheimers would have been attributed to more of a bi-polar high, without other expanation.  Recently my Dad insisted to Mom that he wanted to get up and walk.  He has also been talking about various sibligs etc.  While I say he is good, he does not say more than a few words/sentences so not enough to really detect state of mind.  He has a really hard time swallowing even a few spoonfulls of food.  Meds are in a sprinke form stirred into food like applesace, ice cream or pudding and even then Mom said he swallowed virtually none of what he was given yesterday.

Dr. Said swallowing issues can be both from the Muscle Disease and Alzheimers (he said people with advanced stage alzheimers commonly forget how to swallow).

So, prayers are appreciated.  Both for Dad as he journeys out of this life to the next one, and for Mom as she makes decisions that are so hard to make.

I am so thankful for the ones who set the ball in motion for the Health Care Power of attorney and the Senior Planning that was done.  The Dr's are telling Mom that she and Dad already Made these Decisions when he was healthy.  It really is helpful.

I am also thankful that despite the fact that I have a full workload, my employer has stated that family comes first and I can take the time I need to deal with all this.

[Pants]

Bean - I am sorry for your family's loss.

As for the woman about feeding tubes - I don't get how not inserting the feeding tube in the first place is the same as removing it?

Regardless, I wish your family the best as you go through this difficult time, and hope your father has a peaceful passing.

[NastyWoman]

Bean,  and good thoughts coming your and your parents way

[Wisconsin Beth]

Jan 8, 2014 15:56:14 GMT -5 Pants said:

Bean - I am sorry for your family's loss.

As for the woman about feeding tubes - I don't get how not inserting the feeding tube in the first place is the same as removing it?

Regardless, I wish your family the best as you go through this difficult time, and hope your father has a peaceful passing.

Hugs Bean.   

[Cookies Galore]

Bean, my FIL has ALS and has been placed in the hospice wing of a nursing home last month. I really feel for you! (((Hugs))) FIL had the PEG tube procedure done at the end of November and it has helped. He's skin and bones but he's at least getting more calories every day. Some meds can be administered through his tube, I believe.

I'm leaving work now and when I am on the train I will reread your OP and react more. Hopefully we all can offer some comfort for you.

Neuromuscular/motor neuron diseases suck! There are quite a few motor neuron disorders that are so similar to ALS. Since ALS is the most common, you typically get that diagnosis and try to figure out what it is from there. But the ALS diagnosis does help with some things, like getting disability right away or getting on early medicare.

[wodehouse]

wow.

Sounds like situation is under control with all the documents, that's good.

I know it is awful, had similar experience with my dad, but not nearly as bad.

My best wishes to you and your family.

[saveinla]

Jan 8, 2014 16:06:59 GMT -5 deminmaine said:

Bean- best wishes to you and your parents, and to your Mom for strength during this difficult time.

I agree. Hope you and your mom find comfort during this hard time. 

[Deleted]

Thinking of you bean...

[Jaguar]

Bean we are all here for you, should you need to talk or vent.

[bean29]

Jan 8, 2014 16:09:27 GMT -5 Cookies Galore said:

Bean, my FIL has ALS and has been placed in the hospice wing of a nursing home last month. I really feel for you! (((Hugs))) FIL had the PEG tube procedure done at the end of November and it has helped. He's skin and bones but he's at least getting more calories every day. Some meds can be administered through his tube, I believe.

I'm leaving work now and when I am on the train I will reread your OP and react more. Hopefully we all can offer some comfort for you.

Neuromuscular/motor neuron diseases suck! There are quite a few motor neuron disorders that are so similar to ALS. Since ALS is the most common, you typically get that diagnosis and try to figure out what it is from there. But the ALS diagnosis does help with some things, like getting disability right away or getting on early medicare.

My Dad retired in his late 50's from a trade.  he had a decent pension.  He tried to get SSI but they said he was not diabled enough so he began collecting SS at 62.  He is 75 so long past the point of worrying about SSI eligibility.

The docs are noncomittal, say they can not tell us what they think we should do, but they do not seem to think we should go the route of a feeding tube, given that he is having trouble swallowing, has the evidence of Alzheimers and the Bi-Polar Disease and other overall health issues.

They indicated he had a seziure in the hospital too - one of the meds he takes for bi-polar is also used to control seziers so it did not change anything.

[resolution]

I will keep your family in my prayers.

[Cookies Galore]

Jan 8, 2014 16:55:41 GMT -5 bean29 said:

Jan 8, 2014 16:09:27 GMT -5 Cookies Galore said:

Bean, my FIL has ALS and has been placed in the hospice wing of a nursing home last month. I really feel for you! (((Hugs))) FIL had the PEG tube procedure done at the end of November and it has helped. He's skin and bones but he's at least getting more calories every day. Some meds can be administered through his tube, I believe.

I'm leaving work now and when I am on the train I will reread your OP and react more. Hopefully we all can offer some comfort for you.

Neuromuscular/motor neuron diseases suck! There are quite a few motor neuron disorders that are so similar to ALS. Since ALS is the most common, you typically get that diagnosis and try to figure out what it is from there. But the ALS diagnosis does help with some things, like getting disability right away or getting on early medicare.

My Dad retired in his late 50's from a trade.  he had a decent pension.  He tried to get SSI but they said he was not diabled enough so he began collecting SS at 62.  He is 75 so long past the point of worrying about SSI eligibility.

The docs are noncomittal, say they can not tell us what they think we should do, but they do not seem to think we should go the route of a feeding tube, given that he is having trouble swallowing, has the evidence of Alzheimers and the Bi-Polar Disease and other overall health issues.

They indicated he had a seziure in the hospital too - one of the meds he takes for bi-polar is also used to control seziers so it did not change anything.

I'm sorry all this is happening. I couldn't imagine Alzheimer and bipolar on top of the degenerative disease. My FIL has difficulty swallowing as well, he can only do nectar thick liquids, no solids anymore. He does have a PEG tube, which is placed in the abdomen for direct access to the stomach. Good luck to you and your parents with all future decisions.

[taz157]

Jan 8, 2014 15:56:14 GMT -5 Pants said:

Bean - I am sorry for your family's loss.

As for the woman about feeding tubes - I don't get how not inserting the feeding tube in the first place is the same as removing it?

Regardless, I wish your family the best as you go through this difficult time, and hope your father has a peaceful passing.

Yeah that. (((((hugs)))))

[HoneyBBQ]

I'm sorry, bean. That sounds terrible.

[Jake 48]

Prayers and hugs for you and your family

[Deleted]

I'm sorry Bean. Thinking of you and your family.

[Bonny]

My thoughts are with you Bean.

[busymom]

Oh Bean! So many health issues at the same time! Prayers and <HUGS> for you, your Mom and your Dad.

[Deleted]

All of your family have my sympathy and prayers.

[sapphire12]

Bean -- My thoughts and prayers are with you and your family during this difficult time.

[Happy prose]

Bean..saying prayers for your family.

[kittensaver]

Hugs and prayers going out to you!

[dannylion]

I'm so sorry, bean.  Holding you and your family in my thoughts. 

[mollyanna58]

Sending prayers and good wishes for you and your family.

[whoisjohngalt]

I am so sorry your family is going through this.  May you all have the strength during this difficult time

[Anne_in_VA]

You and your family will be in my thoughts and prayers. You and your mother seem to have incredible strength as you go through this.

[bean29]

Thanks everyone. Over the years I have seen my Dad go from a bi-polar high so bad we thought he would never recover back to the responsible wonderful person he is when he is well, over and over. We attributed it to the healing power of God. So many here are free to offer prayers and Mom and Dad often participated in Prayer Groups. i Pushed Mom to post on the family facebook page for extended family and ask for prayers (which she did) and told her to let her friends know of Dad's condition. I am no longer a church goer but I still pray and based on my experience here I felt it would be well received and it was.

Had lots of errands after work, haven't checked in yet with my family.

[bean29]

I talked to Mom for awhile tonigz

[Angel!]

I'm so sorry bean. My thoughts are with you and your family.

[Deleted]